However, I know several people who chose not to get vaccinated on a religious basis (and this was also confirmed by our Coyote in Zebra Clothing that heard it from several people in their area). They say that G*d will save them. My theory is that G*d taught humans to be smart enough to follow the damn SCIENCE! There’s even a past article about leaning on how leaning too much on faith has been harmful! As humanity has spent so much time learning how to save ourselves, why do some have to choose to help themselves live? Or at least not get sick?

We don’t question our use of seat belts anymore (the law was instituted when I was a kid, and now I feel horrible not wearing one 50 feet up the road). We don’t fight not smoking in a building. Stop signs and lights are laws of the road. These are public safety laws. Ones that have existed for quite a while and probably 99% of the people around follow these laws! Yes, there are always law-breakers, but for the laws above, it is rare here in the USA. But the choice not to get a vaccine or refusing to wear a mask is not helping public safety. In fact, you may be killing others. And these laws aren’t just to help protect your neighbor, they’re for those responders that are responsible for your care. The seatbelts so first responders didn’t have to have as many mangled bodies to scrape off the road, and the covid mandates were SUPPOSED to also be for our doctors and nurses to not be overwhelmed while put at constant risk. The lack of care for them in favor of this blatant selfishness is horrifying.

Vaccines are safe. While statements of vaccine injury are popping up in social media posts, the documented number of TRUE VACCINE INJURIES are one for ever million vaccines. One. And that come from a legal team that represents injured patients. 99.99% of the people alive in the USA have had a vaccine for Measles, Mumps, Rubella, Chicken Pox (or lived with it as I did in the 1980’s), typhoid, polio, and more. Smallpox was eradicated in nature thanks to vaccines. The COVID vaccines are new, but the disease is also new. Some are made using a newer technology – mRNA, others using existing technology. But let’s also take a moment to remember that the mRNA isn’t completely new, as this article from 2018 illustrates. The reasons we get a vaccine is not only for ourselves (protecting us from severe illness, death etc) but also to contribute to herd immunity in our world. Herd immunity saves lives. Most young children don’t have all of their shots, and depend upon others to have shots.

Herd immunity occurs when a large portion of a community (the herd) becomes immune to a disease, making the spread of disease from person to person unlikely. As a result, the whole community becomes protected — not just those who are immune. Often, a percentage of the population must be capable of getting a disease in order for it to spread. This is called a threshold proportion. If the proportion of the population that is immune to the disease is greater than this threshold, the spread of the disease will decline. This is known as the herd immunity threshold. What percentage of a community needs to be immune in order to achieve herd immunity? It varies from disease to disease. The more contagious a disease is, the greater the proportion of the population that needs to be immune to the disease to stop its spread. For example, the measles is a highly contagious illness. It’s estimated that 94% of the population must be immune to interrupt the chain of transmission.

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/herd-immunity-and-coronavirus/art-20486808

More information about just the vaccines can be found here https://www.cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines/mrna.html and here https://vaccines.procon.org/

As someone who has multiple health conditions, I am immune-challenged. For folks like many of us here, with mast cell issues, The Mast Cell Society has been giving constant updates for us about the safety. But I have friends who have little to no immune systems due to cancer, genetics and more. Some of these people are medically unable to get the vaccine under direct orders from their medical team. Those are the people I get my vaccines for. Yes, I get it for myself, but I also get it so that the people around me can be safer. I also choose to wear a mask around people inside a shop or anywhere I don’t know people. I do these things so that I can live a life that is full and happy – but I also do not want to be stupid. I am careful. I also don’t want to be the one who causes someone else’s death. And honestly, without the vaccine, you could be causing someone’s death or serious damage. Can you be okay with that? Truly okay with knowing that throwing your tantrum over individuality and sometimes utter nonsense science about “breathing only CO2” wearing a mask…could directly be how someone dies from contracting this disease?

I am just apoplectic at the lack of care for other people’s lives. How can you say that your religious beliefs in G*d will save you? Look at the bloody statistics!!! Look at the fact that more than half the ICU beds in the entire US are full with COVID cases. And those cases are from unvaccinated people! The CDC posts an update on data every day – I have posted it as the second link.

https://www.wired.com/story/the-dam-is-breaking-on-vaccine-mandates/?utm_source=pocket-newtab

https://covid.cdc.gov/covid-data-tracker/#county-view

Please think about the others around you. Important surgeries, such as ones for cancer, orthopedics, so called “elective” surgeries are being postponed all around the world. For someone with cancer, this means their treatment may be delayed months or years. And how scary is that? Because beds are not available because people are in the ICU with COVID!

I am not a religious person. I choose not to write G*d as I personally do not have a relationship with religion. I believe in something more like Buddhism where kindness is what people are to follow. I try to be kind in all things – this is the first time I truly can not be kind to people who refuse to vaccinate. I won’t interact with them, I won’t be around them, and I will still continue to mask around people I do not know.

I liken trauma to dropping a glass. Depends on the height from which you drop the glass, how badly it shatters. If it just slips from you hand and falls to the floor, the load is not too great, it may just have a couple larger broken pieces that can be more easily repaired. However, if you dropped that glass from a six-foot ladder, the fall to the floor will cause it to shatter into countless pieces. Pieces that must be picked up shard by shard to avoid further injury from its incalculable number of jagged edges.

Much like collecting each tiny glass shard from the shattered glass, picking up the pieces and mending layered trauma can be precarious, taking time and diligence. With the right help and tools in your arsenal, it often takes rewriting old scripts within the walls of our inner world and re-envisioning a different outcome in our corporeal world that has cut our feet far too many times. Healing is messy and the hardest part is that science and faith both agree that one cannot heal from trauma in isolation. It takes a leaning-in and reflective vulnerability to heal from our deepest cuts … when our most primitive reflex is screaming at us to dawn our protective ‘armor,’ and run. Sometimes even from those we know are our ‘safe’ people. No one said trauma made sense because it does not.

Every now and then, we have a chance to re-write an old traumatic even through a different lens when a similar set of circumstances arise, reminiscent of the inciting event(s). I have been doing intensive trauma work, both holistically and allopathically, for a couple of years now. I am blessed with some amazing practitioners who saw an opportunity for me to rewrite some of my ending through several upcoming, typically triggering (and often avoidant) situations that bring to the surface a heavy and familiar hypervigilance. My glass fell from a rather high ladder long ago, it shattered, and there is much to be re-written. In this instance, the combination of gender and role seem to represent five hundred of my thousand old, layered cuts in a billion little ways. In a nutshell, I have numerous chronic health challenges, significant medical trauma, trust issues with males (from a young age) and have had significant traumatic events with certain types of male healthcare providers (i.e., neurosurgeons, therapists, et al).

As fate would have it, I have a rather unexpected upcoming neurosurgery. Ironically, with a male neurosurgeon and I am working through the layers of PTSD that surround it, with a male therapist. They both seem to be wonderful humans and more importantly, safe. I think the universe is telling me this is my chance to right some wrongs and heal my soul, but, the choice to do the hard work is ultimately mine. What if facing my pain and fear through a different lens IS my chance to write a different ending this time? My chance to slay the dragons that relentlessly echo in my head and block my path forward toward a whole-hearted life? To quiet those, “Little Earthquakes” a bit more?

To change our respective stories, we first must do what feels like the impossible … we must show up and be seen. No matter how messy, bruised, battered, afraid, and tear-stained we are; no matter how hard it is. We MUST lean in and show up to move through it. That is not easy stuff.

Throughout this upcoming surgery and its subsequent recovery; I will choose to show up and be seen, knowing it will be uncomfortable and require a much higher level of awareness, vulnerability, and the ability to challenge old feelings of abject shame while quieting the internal raucous of past abandonment issues. This upcoming journey feels tenuous and daunting, but I think it is supposed to. If we stay comfortable in our fear and do not try to courageously peel back the layers and rewrite the stories that caused so many of the tiny cuts, we will never be able to change our ending nor help others change theirs by proxy.

My point being, take the chance to heal some of your cuts if the opportunity presents itself. The jacket will feel too tight at first and but when you see a chance to re-write a previously painful ending and you are in the right place and space to do so … seize it.

Hurt. Heal. Grow. Share. Repeat.

-S. Merek Southwick, PhD

Friendships, in general, can be ephemeral. They can wax and wane and sometimes disappear with age, changing locations, and just life in general. I am very lucky to have two friends who happen to be sisters that I have known since we were 5 (well, the younger was 4). They are more like my sisters, and we share our joy, pain and laughter often. Many other friendships came in high school, a few in college (I didn’t have a good experience in college, which I will go into in a future post) and more from jobs later in life. While it’s normal to gain and lose over the years, I have lost more friendships than I would like to admit in my 7 years of chronic illness. It’s a strain on the dynamics of a relationship of any sort when you can’t go out or visit as often as they’d like. Constantly hearing that the friend you want to spend time with declines time after time, I’m sure it can make them feel unwanted or under appreciated.

I’ve made the decision to accept that it isn’t my fault that people move away from my friendship. These have not been easy things to accept. I miss the shared history, the fun times we have had. It isn’t easy to accept the loss of friends, but after I’ve reached out multiple times and don’t hear back, then I have to accept that they’ve moved on. I’ve cried over these friendships leaving me, but I also know that I didn’t do anything wrong. I do try to talk to my family and friends when frustration strikes to discuss and find a resolution. I ask people to tell me if I do something they don’t like at the time so that we can work through it. Please remember that these are MY experiences and feelings, and can be very different than someone else’s. The friends I have retained still ask me to do things, even if they know I may cancel. They are okay spending time on the couch just being in the same room. I may still say no, but it is the ACT OF BEING ASKED that makes such a difference to me, and my friends. Just the simple action of letting us know that we are still accepted and welcomed in their space. That we are wanted. It’s such a basic thing yet something most often forgotten, because they assume we will say no and that no means we don’t want to be included anymore.

Being asked means you feel included, even when you physically can not do it. To me, that is what is important. And when I do attend something, I need to build in recovery time. Normally for ME that is a day, but I know people that for every hour of being social, they need a day to recover. So if they go to a 4 hour event, it can take 4 days to recover.

It is the rare occasion that people see my pain and challenges for themselves. I have other friends who use aids sometimes, and others who are full-time wheelchair users or other types of aids. These aids, no matter if we use them occasionally or every day, are our lifeline to the outside world… but it’s complicated. This is why zoom was so important. The pandemic has done some good things in this world; allowing people to talk via Zoom, FaceTime and other apps has offered a world of accessibility that people like me would otherwise not have the energy to accomplish. This is something that needs to continue long after Covid passes into our memories, because it’s been a game changer for many people.

Remember that at the end of the day, friends can be support, become your family or also leave our lives. All of these things are acceptable, it is just how life can change all of us. And our lives may be a struggle, but unless someone tell us, we may be missing what the friend is experiencing. No one can walk in our shoes, nor can we walk in others. Kindness is the important thing in all aspects of my life, and I try to help others by being kind about what I may be missing.

Derek Redmond hurts himself, and he refuses to quit, even though his face clearly shows his agony. His father RUNS to him and helps him, sometimes forcefully shooing the officials away.

Life for a Zebra can be like these runners. We come out of the starting gate with our peers, and at some time in our lives, the injury slows us and eventually, our peers are so far in front of us that we are straining to even see their dust. We lose friendships. We lose jobs. We lose our livelihoods. Some lose almost everything.

For me, my mom is like Derek Redmond’s father. She holds my arm and supports me while I hobble along attempting to run the race of life. She comforts me when I cry, shoos people away who may doubt my pain and issues, and generally helps me keep going. I want to finish this race of life in my way – helping others and staying as strong mentally as I can.

Mental strength is HARD. Imagine that you spend every single day fighting insurance companies for approval for every thing you need, talking to multiple doctors about the many issues that plague you, trying medication after medication to manage conditions, trying to explain to anyone that yes, you agreed to dinner but the day was hard and now you need sleep. All of these things are draining. Most people find just one of these things hard, so multiple things in a day, and every day, feels like that Olympic runner.

Zebra (or any chronic condition) life is HARD. It means you may not be able to work, but you work every minute of the day to function. Sometimes just getting out of bed for an hour is work. Sometimes the victories in our lives are so minuscule to other people, and so gigantic to us. Those victories range from making more than one meal a day (cooking is hard due to standing and repetitive motions with the joints) to walking a block to getting a much needed medical test done. To some people, these victories are meaningless. To me, and many of my Zebra friends, they are huge. Some days, one of these things is enough. Some days you get multiple things done, but pay for it the next day. Those are days I just say to myself “I am strong enough to weather even these bad days”. I know that my words can seem trite to others, but it works for ME. But what works for me, may truly hurt others. That is the nature of a Zebra life – we are all covered in different stripes, and we all struggle in different ways. I think everyone has a different journey to go on, and what works for me, may not work for anyone else. This just happens to be MY way.

This is a quote from the Derek Redmond interview. Derek’s father came down from the stands and ran alongside Derek. As Redmond later recalled:

The old man put his arms around me and said, ‘Look, you don’t need to do this. You can stop now, you haven’t got nothing to prove.’ And I said, ‘Oh, I have — now get me back into Lane 5. I want to finish.’

Derek Redmond, 1992

I want to finish the race, and I have to prove to myself that being a rare disease person isn’t the only part of me. I am also a friend, an aunt, a daughter, a fighter, and a chocoholic.
Thank you all for reading my first note.
ZebraSarah

After having the world’s stupidest period my whole life, I finally get a doctor who says “hey, PCOS” and doesn’t do anything.  But, after a couple of years of my period playing with me (everyday, nada for months, then need transfusions) a good doctor repeats the PCOS bit and then does the newest version of a DnC and I find out I have Cancer.  Endometrial adenocarcinoma, stage 1/3.  Look at me go.

Then a CT scan shows several inflamed lymph nodes nearby and either they’re just grumpy because I have an infection (my sinuses have hobbies) or they’re mad because there is cancer in my body, or the cancer has spread.  So. February 11 I have a total hysterectomy and they’ll take out the grumpy nodes and test them.  It will be ten or more days before I find out if my cancer has wanderlust. Seriously, look at me go…nuts I think.

No two people react to the pressures of cancer, strange barely known diseases, or other continually vicious diseases.  Some are anxiety zebras, but others are giraffes or elephants, whatever.  Personally, I think I’m a pied aardvark, and yes I’m just that weird.  Or maybe I simply feel that different from others I’ve spoken with who’ve faced cancer or other attack diseases.

I feel like I am cocooned with numbness, discounted and floating watching things happen “over there”.  Sometimes I feel like I’ve been struck by lightning and panic overwhelms me.  I’m not sure how to deal with it except to endure and hope to make it out the other side.  There is no set of rules or map to make it through this with who you were before completely intact.  Not that change is necessarily bad, but in the midst of dealing with something like cancer it’s a bit “et tu, brute”?

Friends and loved ones want to help, and in that desire, can add to the pressure and suffering of the patient. Some folks want the wailing and hugs, others want distance and calm. People like me will reach out when we can handle it and pull back when it just makes things worse.  It helps me to know people care, I just can’t handle the overload. I suggest that family and friends let the patient know you care and will help, but also let them feel it’s okay to ask you to step back a bit sometimes.  It’s horrible to feel overwhelmed and afraid to ask people to give you some space.  We’re trained by society to feel that it’s selfish not to accept help, even if it adds to the pressure and stress we are feeling. 

The time after the operation, waiting for the test results will be my worst.  I expect I will try several friends and family members patience.  I can only hope that they understand there will be times I want to talk with them, others I won’t.  I may do everything to avoid talking about “what ifs” and cancer, and it might be the only thing I talk about.  I just hope they can go with the flow, and make this nightmare a bit less in charge.  

Administrator’s Notes

Your friendly Coyote in Zebra Clothing here. If it wasn’t implied by this post being shared on this page, the reaction talked about here is completely normal. Nothing that was talked about is unhealthy or dangerous.

A lot of this comes down to understanding what someone is going through rather than assuming you understand. Respecting that, as stated by the author, no two people react the same. Whether not wanting to display their grief publically, whether they want to be hugged, whether they cut off their emotions and talk about it clinically.

What we should all be doing when someone is facing a life altering diagnosis, is listening. Being there as they ask us to.

It is easy to sit and say what we think the person should be feeling, or how they should be coping. But as long as they are moving forward, even it if is extremely slowly, then let them go at their own pace. Be supportive in ways they ask you to be supportive.

While the author doesn’t have EDS, and while cancer is a disease that we’ve often come to be able to cure, that doesn’t take away from the emotional impact. And as stated in previous posts, diagnosis is a Pandora’s Box. It’s grieving and we should all know that grieving is a complex road for all of us.

When invited yesterday to be a contributor I became excited. Here would be a place where I can, in guarded anonymity, pour out my struggles and, more importantly, share wisdom gained from experiences. Little did I know that I would spend the entire night in a vivid dreamworld that illuminated the depth and width of how I feel at home.

As long as I can remember I have never felt loved, appreciated or wanted by my Mother. This was evident as a child when she either allowed me to be with her in a home where the various stepfathers could abuse me in every way imaginable or pawn me off to my various grandparents. Creating an adult who feels that nothing is ever good enough, who feels like a fulfillment of disappointment , and who lives to find some glimmer of appreciation and love from the person who should give this freely is created by the life I’ve led.

Nothing I do is good enough for my Mom. Nothing that I’ve accomplished is worthy of praise. No matter the lengths that I’ve gone through and the sacrifices I’ve made I remain in a perpetual state of disappointment to her. Some of her life long friends have called her out on this. I’ve accomplished so many praiseworthy things. These include earning four college degrees, becoming a college professor, serving in the military, being a professional athlete on the national level, awards that number in the hundreds and so much more. None of it is appreciated by my Mom.

Last night I had a very real and vivid dream about visiting a small town that I know quite well. Everyone was supportive, happy, attentive, and loving. Everywhere I went in this town I was greeted by a warmth that left no doubt that I was loved and interest in the various aspects of my life was genuine. They even helped me to prepare to return home only to have every attempt fail, yet every time I was sent on my way it was with the invitation to please move to the town as quickly as possible.

Imagine that – being where I am appreciated rather than hated.

This is how I imagine the next life. I think that I’m fulfilling a service to this woman to get her through life. Those who have appreciated me and loved me will one day welcome me into their arms again in a higher level of living. I somehow think my Mom will be there, but somehow put in her place and with the loss of control over anyone else, save herself.

Just so you, the reader knows, I’m very aware of how enabling, dysfunctional, and co-dependent all of this is. I am living in response to a higher authority in my life. The maker of the Way. The whispering of all that is good and right telling me to have forbearance. If I don’t I know to the very depths of my soul that I will learn this in some other way, which I don’t want. I can’t know how this will happen. Would it be through reincarnation to have to suffer through horrific trials again? Would I be required to finish my servanthood in the next realm? Best to listen now and fulfill the requirement as best I can.

Be around the people and in the places that feed you as much as possible while somehow living your mission

She says “Oh.”

*Fact: You never want to hear your doctor say “Oh” when looking at any test results

I say… OH???
Her…Your neck is bad. Really bad
Me…….. >Can I just get a new body? Because this one sucks donkey turds.
Her….. No, but let’s see what we can do.

Increase Gabapentin to max dose.  Another round of my favorite <snark implied> nemesis, methylprednisone.  Add Topamax for migraine control and to help with the tremors in my hands caused by the nerve damage in my neck.  Order an inflatable home c-spine traction device.  Caudal injections in my l-spine and SI joint . She wants an epidural block done on my c-spine .  All of this in an effort to put off cervical spine surgery for as long as possible .

It’s one of those days where too much happened in a very small time frame.  And now, I’m sharing my pity party with all of you.

But, I will process these new problems, and I will add these new meds to my overflowing pill planner.  And most importantly, I will tell myself what I always tell myself whenever a new roadblock pops up.

It is what it is.

If I cannot change the facts, fix the problem, well….. there is no point in making myself miserable over it.  We cannot dwell on that which is impossible to change.
               
*Pssssssst…  I still want that new body.  Preferably one about sixty pounds lighter, and ten years younger. 

For me, as a child of the seventies, none of the doctors in my pissant, backwards, steel town, had even heard of Ehlers-Danlos. Of course neither had my parents. It seems as if I always knew that my joints were different, that my body could do things other kids couldn’t. It started when I was quite young, I believe I was three when the doctors put me in hard, metal braces with special shoes, from my ankles to my waist.(think Forrest Gump) There were multiple reasons given for the braces… hip dysplasia and spontaneous subluxations of the hips and knees. Ankles that were weak, etc… I wore those things for two and a half years.

I can’t remember a time when I couldn’t spontaneously sublux whatever joint I wanted. I delighted in freaking out my classmates by pulling my shoulders out of socket, and then putting my arms behind my back, but in the opposite direction. I was pretty athletic, and I  sprained my wrists, knees and ankles more times than I can count. The doctors would be astounded at the enormity of the swelling in my sprained joints, and would insist that they absolutely *had to be* broken… Nope, always sprained. They told my parents that my joints were just “wonky”.

In addition to all of the problems with my joints, I also had numerous issues with my bladder and kidneys.  Most notably, the urethra tube between my kidneys and bladder wouldn’t stay open, causing urine to be trapped in the kidneys, causing massive infections.  The urologist would stretch it back open only for it to close up again a few months later.  I spent so much of my childhood in the pediatric wing of our local hospital, once staying for almost a month!  I had my favorite nurses, I  even learned how to ride my IV pole in the hallways.  But still, not one of my doctors put the puzzle pieces together.

I grew up, I joined the Navy, and even they thought something was wrong with me (I developed my postural tachycardia while in the Navy) Forever passing out whilst standing formation, waking up in medical, hooked to an IV, getting electrolytes. They even referred me to a rheumatologist, but they came up empty.
Then came my first shoulder surgery, my right one, it just would not stay in place. An open procedure was performed, leaving me with hellacious pain, and a scar from the edge of my neck, all across my shoulder blade. Still, no doctor caught on.

An accident in 1999 resulted in a posterior dislocation of my other shoulder, I’ll spare you the details, but after five separate surgeries on my left shoulder, it still subluxes if I dare pick up a gallon of milk with my left arm. Still, no bells went off in my doctor’s brains.
Another accident, more surgeries, tachycardia, degenerative disc disease, SI joint dysfunction, trochanteric pain syndrome, gastro, and the list went on and on.
Until one day, at forty-seven years old, I sat in my primary care doc’s office.
Me “My knee is bugging me, especially when it slides sideways out of place”
Him “Knees don’t slide sideways out of place ”
Me “well… mine do”
*proceed to demonstrate*
Him. *shudders*
“First of all, never do that again. And second, you are going to see a rheumatologist, because suddenly all of your problems make sense.”
The rest is history. Saw the rheumatologist, she confirmed diagnosis, and suddenly I’m a Zebra. And I have never felt so vindicated in my entire life.
I wanted to tell all of my childhood doctors, and my parents, and even my teachers
SEE????? I was not, and I am not, a hypochondriac.

Wow, that took a lot to write, but I feel good for getting it out there.
Thanks for *listening*
~Tammy

…is that it is surprisingly isolating. In an odd way it gives one some sense of what it is like to live in the closet in earlier years. We, as a culture, don’t even like to talk about trauma in an abstract sense let alone in a productive way for those that have gone through it. Actually, George Carlin had a bit about this on the topic of Shellshock/PTSD that very much relates to this. Just remember that comedy works because by and large it is a truth, an uncomfortable truth that we have a cathartic laugh about to feel better.

Hearing it put this way really seems to suck the humanity out of painful experiences, or at least what is deemed “negative” from those on the outside. Changing the words we use to even discuss trauma, to make them more comfortable to speak aloud, also has the effect of pushing those that have gone through it further away from those bringing it up. Making the terms to discuss trauma more polite, eventually we come to view the effects of trauma as being less severe to mirror the terms that have been used. We rely a lot on our words, so while Shell Shock sounds as terrible as it really is, Battle Fatigue sounds like all they need to do is take a rest and they’ll be fine.

There is an element of human nature in this. We want to fix people. We want them to be better and not in pain. When they’re in a type of pain we can’t fix, it makes us VERY uncomfortable. What’s the next step? If we can’t fix their problem, at least we can fix how uncomfortable it makes US to acknowledge it. Our brains can be so overwhelmed by our own discomfort, that we forget to remember those suffering and keep them within our own spectrum of empathy. But in doing that, we inadvertently are saying to those people “stay away from us while you’re like that” or “I can only deal with you when you can pretend to be okay”. So…to not be so alone…we adapt and learn to have a variety of social masks at our disposal.

When Pretending to Be “Normal” Becomes Second Nature

There is this point where you have been in a bad way for so long that you’ve normalized some of the tragic things that have happened to you and that you have seen, such as being abused as a child. Then one day you find yourself in a group of people and you mention “yeah my mother use to do X” and all of a sudden people begin reacting with a display of sympathy or thinking you are attention seeking. This can be as shocking as it is isolating because sometimes, we just want to talk about our past like everyone else seems to. To talk with someone who has been there just to banter about it and feel like it was normal. We’ve already gone over it in our minds enough that we’re a bit desensitized to the experience, or maybe we’ve managed to convince ourselves that everyone has gone through similar experiences.

The reaction from our peers, jolt us back (often very unexpectedly) to just how different our experiences really were. It mentally launches us out of whatever group we happen to be interacting with at warp speed complete with barbed wire barrier and nothing but a tin can telephone. The mask has slipped down unintentionally and, even if we quickly put it back up with some crafty application of gallows humor and a new mask that has a convincing smile, our secret is out and there’s no going back. Or…at least that’s how it feels. That only increases if we perceive that our circle of peers begin to treat us differently. “Perceive” is the important part of that statement because it could be actually being treated differently or we’re expecting it so much we see it when it’s not there.

Isolation and Our Relationships

This one aspect (of many) is why some abuse victims remain with their abusers for so long. They decide that the isolation of the outside world is too great and maybe, just maybe, staying with the one person who understands and seems accepts your damage is not so bad after all. It can be easy to blind oneself to the terms of that perceived acceptance. After all, they think to themselves, a little gaslighting and scapegoating is not so bad when compared to being out alone in the world that doesn’t understand you, is it? At least with the abuser you can put on your choice of masks to get through the day to day while still having some measure of a twisted form of acceptance to go home to. They make knowing what mask you have to put on predictable, and again, comfortable. Still though…ever see those pictures of what happens when you wear tight shoes or corsets the wrong way for too long? We are shaped by the masks we wear.

Similar to the tight shoes and improperly worn corset, if they’re worn for an extended period, it can become a hazard to then take them off. Our masks are no different, we start to rely on them instead of being able to realize when it is something that needs our attention. We don’t know how to function without using them. It makes it increasingly difficult to associate with “normal” people. Hiding behind the masks becomes our new normal and comfortable way of life and the thought of leaving that behind is (or at least can be) paralyzing. It means facing all of those horrible fears of isolation head on and risking what little we’ve gotten accustomed to as a security blanket. The longer it goes on, the scarier the monster is to face.

But That Isn’t The End of Hope

It’s never too late to reach out and combat these feelings of isolation. The important thing is to do act with compassion towards yourself and a healthy, stubborn ambition. Deciding that you are willing to approach the proverbial monster in the shadows is a major step that should never be underestimated or underappreciated. Don’t beat yourself up over the time it will take to make significant improvements. Remember that it is generally thought that the amount of time that you endured the trauma AND avoided working on it…will be close to the amount of time it takes to work on it as well. This isn’t meant to frighten or intimidate, but rather as merely a reminder to be kind to yourself through your process.

One of the biggest steps after this is in this is gaining a high level of self awareness of these things. Make a safe space to allow yourself time to process whatever traumatic events or memories that have come up in your life. This may be the office of a trained psychologist or simply a quiet, isolated space to freely process your emotions without fear of being approached. To learn that while masks are important to everyone in daily life, to limit their use to healthy amounts rather than a base state of being in public.

Search for a few friends who have the right amount of damage and awareness. That’s not to say ONLY have friends that have experienced similar trauma, because that defeats the purpose because the goal is to find ways not to live within your trauma. However, there is a type of validation that comes with being able to casually talk about your life that most people take for granted. Sometimes…we really DO just need to talk with someone who has been where we were and can see the world through a familiar lens. To not feel so alone in the world does wonders for one’s state of being. Find support groups and share stories from those that have been there and, ideally, with those that have worked past at least some of it.

The hardest steps are always the hardest, but we can do amazing things if we do it together.

My parents wanted me to come and visit and spend more time with them in San Francisco, which was an hour and a half ride by public transit (I don’t drive) each way, plus whatever time I spent with them. I often begged off due to fatigue, or due to pneumonia-like symptoms. See, I say “I feel like I have pneumonia,” which means that I feel many of the same symptoms of having pneumonia without having been to the doctor to get diagnosed. Having had as many cases as I’ve had, I can usually tell when it’s severe enough to warrant seeing the doctor, especially considering that seeing the doctor meant I had to work a half-day instead of a full day.

One time, when I was over at my parents’, they had left their email open. I made the mistake of reading it, and they declared that they believed me a hypochondriac in it. This was before my diagnosis of fibro, but while I was definitely expressing symptoms of it. Unfortunately, many of those symptoms resembled my mom’s, and she has MS. So they perceived me as wanting attention by pretending to express the same symptoms she had. This was not the case.

The world believes that what’s wrong with me is all in my head. My physician, blessedly, is not one of them. But even my first application for SSI included the words “it’s all in his head.” I even had a doctor in the ER tell me that I “had a lot of fake problems.”

I’m here to tell you an important message. It actually is all in my head, in that fibro is overactive nerves that are messing you up for no good reason. There’s no way to see it. There’s no way to prove it. But that doesn’t, in ANY WAY, make it any less real or valid. I am still in pain. I still have fatigue, and lose my apetite, and have hot spots where it is agony to be touched. I still find it exhausting to spend time around people, or loud noises, or a lot of strong smells. I still have the taste of food altered by my illness, and have floaters in my vision that sometimes render me unable to see much of anything, and get fairly awful tinnitus periodically, and sometimes I sleep for days at a time basically, getting up to eat and go to the bathroom and nothing else. I still forget words and use the wrong words for common concepts.

My illness is real. It is invisible. But it is real. And it doesn’t matter what other people think of it, whether other people believe me or not. It’s real. Medicines designed to treat these illnesses work and help to alleviate my symptoms. Medicines designed to treat some of the symptoms (like pain medicine, which has a history of not being effective for most fibro-related pain, and is only for breakthrough pain) are not effective, as expected. Altering my diet some, attempting to do more stretching and exercises that are shown to be effective help alleviate my symptoms. My illness is real.

I never told my parents that I read that they called me a hypochondriac. It wouldn’t be helpful and would just lead to us fighting about it. But I can, in all honesty, safely say that my illness is real.

It’s a tough fight to go through, having an invisible illness and facing a world that doesn’t believe in it. I am not the kind of person for whom support groups are effective. I use mantras to remind myself that I have this illness, but that it does not define me. That my limitations are real, but that I can continue to live a fulfilling life nonetheless. I remind myself that the opinions of others do not define me either, and that it doesn’t matter what anyone else says, my illness /is real/. Never let someone else tell you what you’re experiencing when it comes to this sort of thing. It’s hard, but you have to stick to your guns and know that it’s your life, your experience, and it’s real.

And anyone who tries to deny it? Examine whether they are necessary in your life or not. Give them a good, hard look. Because chances are? They aren’t. And you will be much better off without them.

Always remember: Just because it’s in your head doesn’t make it fake or untrue. It is real.