I have lived with plain old PTSD for over 12 years. I am familiar with the panic attacks, the dissociation and the avoidance. I have made my peace with it for the most part – I know that the dissociation, however impractical, is there to protect me when things get too overwhelming, and for the most part I am now in control of my triggers. Of course I would rather not have it at all, but compared to a few years ago, the effects on my day-to-day life are minimal. I mention this because it’s from direct experience that I can say those same feelings and reactions are now linked with a new trigger for me. That trigger is medicine.
Something as small as going to the GP now sends me into overdrive. I am fearful that I will get the reactions that are so common for patients with EDS — the doubt, being looked at like it’s all “in your head” and being talked over by a doctor who refuses to listen. When I go to the doctor, I know it is a million times more likely I will be told that none of my conditions exist, or they are far too rare for someone like me to have, than for a doctor to actually accept that I am ill. They will sit and talk over my head to the person with me rather then make eye contact and discuss things with the 30-year-old woman in front of them. I am made to feel sub-human. I am made to feel “stupid,” attention-seeking and small. Worse still, I am now so disheartened that I spent over a year sitting with new and worsening symptoms without seeking further help.
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This systemic neglect can cut deep into the mind of someone with a rare or chronic illness. It seems outrageous to belittle a patient to the extent that they no longer feel safe seeking medical care, but it appears to be a very common occurrence. I know so many others who now avoid medical intervention completely. We simply don’t have the energy to keep fighting anymore.
Recently I had to change GP surgery. It took four years of neglected referrals and wasted appointments to push me to a point where I had no choice. The reason for my reluctance to change was simple: there was no guarantee a new doctor would be any better, and I couldn’t face the idea of going through everything again, getting my hopes up and then being shot down once more. The more this happens, the worse it feels. I may have been strong once upon a time, but these days I have no energy left to withstand another onslaught.
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I’ve had multiple referral requests either refused or the doctors said they’d make the referral but never did. One was for breast screening that should have been made six months before my 30th birthday, because both my parents have had cancer and I carry the BRCA2 gene mutation, which puts me at an 85 percent chance of getting breast cancer. Another was for a scan of my spine after one leg went completely numb for six months for no apparent reason, and I had several occasions of short-term numbness/paralysis of both legs. I now have limited feeling in one leg and it is very weak compared to my other leg.
Another referral was to the community mental health team after my depression got unmanageable over the summer – the GP openly admitted I had scared her with how low I got this time around. Although she repeatedly told me this referral was in the pipeline, again it was never made. Finally, she told me she would not treat my severe vertigo unless I was under the care of a neurologist. She suggested a referral to neurology, but again it never occurred. These referrals were suggested by the GP. I did not push for them; I didn’t ask for them. So why didn’t these doctors do them?
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Each and every time issues like these happen, a little more of my resolve dies. It is almost impossible to keep on pushing when every appointment is at best a waste of time, and at worst a personal attack.
I am exhausted from fighting, proving, and undergoing frankly unpleasant medical tests only for the results to be dismissed. I am tired of trying to fight for the care people with more common conditions often get automatically. I am just so tired.
It truly surprises me just how many PTSD symptoms are now cropping up whenever I need to make contact with a doctor. My first appointment with the new GP felt horrific. I had been dissociating all day, and the nearer it got to my appointment time, the more I started to panic. My heart was racing, my breathing shallowed, I was physically visibly shaking, and by the time I had to go I was terrified. “What if no one believes me? What if he makes me feel like I’m attention-seeking? What if, what if, what if.” I found it extremely hard to talk to him, and although I brought a stack of hospital letters with me (as proof I wasn’t making things up), I found it very difficult to know what to say. Although he was surprisingly nice about things, I was still left shaking at home for two hours after that appointment.
So far, he hasn’t been as bad as my last GP, but I’ve lost so much trust that I am still finding it extremely difficult to build up enough energy/courage to make further appointments. So much has been neglected in the past that I feel terrified that continued appointments will only make him think I am making the whole thing up. I am living with numerous symptoms left unmanaged, uncontrolled pain and fatigue worse than it’s ever been. I have ongoing issues with depression, but I have avoided seeking medical attention due to the persistent false idea that physical symptoms are caused by mental illness. In reality, I get depressed because my physical symptoms have dismantled my life one ability at a time.
Of course I’m depressed when my body is so unpredictable. In just five years I have gone from being able to dance for 16 hours a week alongside a full time degree to barely managing two hours sitting up before I am exhausted. I am wobbly, I am in pain, I am unable to manage basic self care without assistance. Who wouldn’t be depressed? Yet I can’t discuss this with medical professionals for fear they will automatically then write off all other symptoms as psychosomatic.
It shouldn’t be like this. We shouldn’t be terrified of making a doctor’s appointment or going to the hospital for treatment. We shouldn’t be scared of being honest about how low we feel emotionally due to our physical health difficulties. None of this should be happening to any of us. EDS is not a mental illness, but managing the neglect we face often causes depression, anxiety and PTSD.
For those on the outside looking in, it can be a frustrating situation to observe. I couldn’t explain to people why I couldn’t change doctors or why I was ignoring symptoms. If you are a friend or loved one of another Zebra, please understand this does not mean someone doesn’t want to help themselves. Be there for them, talk to them and most importantly listen. Support could make all the difference in whether someone feels strong enough to face another battle – we can’t always do this alone.
If you’re going through a similar experience with your chronic illness, you are not alone. Fear is a nasty business, and I hope one day this situation changes. In the meantime I will be continuing my push for help, and perhaps one day, going to the GP will feel just like it should for anyone.
Read more stories like this on The Mighty:
Making Peace With My Ehlers-Danlos Syndrome Diagnosis
Fighting My Inner Critic as Someone With Chronic Illness
What Treatments Work for Ehlers-Danlos Syndrome?