Dear Doctor: Yes, I Struggle With Mental Health, but My Chronic Pain Came First
You are the one who has been there for me since the combination of my chronic ailments, some genetic and/or congenital and some that began in my teen years and again in the prime of my life. You were there for me when I couldn’t commit to a full-time job any longer. You were there when the genetics department told me I have an answer to why these seemingly unrelated issues are indeed related – hypermobile Ehlers-Danlos syndrome (hEDS).
You don’t underestimate me. I love that about you. You can see what I’m capable of – trust me, I can see that very clearly too. Some days I can kick butt and other days I am in a fetal position from pain and unable to stop the flow of tears. It’s confusing and complicated and I know you’re only human and haven’t experienced chronic pain yourself. It’s very hard to understand anyone else’s pain but you listen and you are compassionate and I really love having you as my PCP/internist.
However, today I saw you and you said something that numbed me and in that instance I couldn’t think of a response. You said something along the lines of: my physical conditions aren’t that bad and I should seek out a therapist/psychiatrist.
Yes, my family has a strong history of mental illness – but physical as well.
You had me intensively psychologically evaluated. I was not struggling with mental illness until my physical pain took its toll on me. I am seeing a team of mental health specialists because, make no mistake, I am keenly aware of the cycle of pain and mental illness.
I attend physical therapy weekly and do it daily (as much as possible) and eat the right, nutrient-dense foods. I’m trying natural remedies and now branching off with an open mind.
It’s not one issue, like the right-side back to neck pain that literally keeps me up and wakes me up when I’m lucky enough to fall asleep. It’s not just a random migraine – I get them chronically. It’s not even the bladder and kidney-stone making kidney disorder I have, yet the collective issues that are co-morbid and all related to EDS that render my life full of pain and unreliable for employment other than part-time, flexible positions.
The progressive nature of EDS is not understood by you. I understand you are doing your best in getting me any care I need. I assure you, there is currently no one I can find, through my research and others, specializing in EDS alone. Geneticists diagnose and then they give you recommendations and send you away to other specialists. Then, after months or a year of waiting, the specialists just focus on the one problem you have and don’t collectively put the pieces of care together.
I advocate for myself because this is now my job and because my mental and physical health depend on it. I research and people call me obsessed. If I don’t talk about pain then I am suddenly better. When I complain about my pain, I’m a complainer. I’m judged no matter what I do – so I will do me anyways.
We each have a uniquely different combination of systemic issues. There are people out there who don’t have the physical or mental wherewithal to fight for themselves and they are hurting. I can’t immediately fix that, but I intend to volunteer with my fellow EDS friends to help make changes in the medical community. I will fight to bring awareness and hopefully earlier diagnosis so the young can start strength building early.
The good news is I’m used to “fighting fires” and pushing through bad times. I also have a great support system at home and a great doctor – you. The bad news is accepting that there is “always something” physically stopping me in my tracks is something that I have not mastered yet.
Even though depression isn’t cured by positive thinking, I will make an effort to think that way every day, as I count my blessings.
There is no cure for the degenerative nature of EDS and some of my related conditions but I can make decisions to live my best life. Just please, as my favorite doctor – a real genuine person who is trying your best to help me – don’t put my mental illness before my pain. Pain changes the brains chemistry. I’ve done my research. I know it’s part of it but I know it didn’t come first.
Treatment needs to start with the primary condition – even when mental health is a big part of it.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via Wavebreakmedia Ltd.