Since graduating high school, I’ve watched the people I grew up with become various professionals of sorts. People are becoming good at something, making careers and lives for themselves, and I find that although I may have areas that would be considered “career aspirations” the reality is, in this time I’ve become a professional patient.
I’ve gotten a top notch education in the innerworkings of medicine, human pathophysiology, and navigating the complex health systems in our country. My specialty is in migraine and headache medicine.
Although I am not degreed in the same ways my physicians are, I still am an expert in the area because of my lived experience with migraine disease. I know the plain speak we use amongst each other as people living with this disease, the ways we’ve come to describe our experience, the adaptations we’ve made to survive, and so on. I know the medical speak that allows me to communicate with most health care professionals conveying my knowledge of the disease and the mechanisms we may try and manipulate to reduce the disease burden. And I know the science lingo, the stuff we avoid mentioning in doctors offices – because yes we’ve read the same studies – but the theories are too complex and the words too long to practically use in conversation.
I know each intricacy of this disease. The different treatments, medical options and holistic routes. I know dozens of theories for doctors and experts across the globe for where each may fit and why some treatments may work for others.
I get migraine.
It makes sense to me.
When I feel stuck I know there is a community of individuals in many different spaces that can help me get unstuck. People I can bounce my own theories for why a medicine might work or not off of. People who can help me navigate strange insurance barriers. People who experience the pain in the same way that I do that can offer insight into the direction I might want to take next.
And there are doctors who I can access to get answers.
Even though I don’t have hope for large amounts of progress in reducing this disease in the near future, I still feel supported and like I know what is happening within my body.
Arthritis on the other hand, I feel none of that.
I feel divinely unsupported. I feel alone in this journey. I don’t know where to turn.
I am a complicated patient with complex needs and I am not willing to sacrifice every other part of me to treat one disease. But because of that, I have no support.
I’ve had active Psoriatic Arthritis for a little over a year now.
The strength in my hands is much lower than it used to be. My right arm especially seems to take the brunt of this disease. The arthritis spreads from my shoulder, down into my elbow, and into my wrist and hand. It aches. It is stiff. Sometimes, it keeps me up at night.
I have the basic understanding that long term goals for disease management involve reducing inflammation so that it doesn’t eat away at my joints causing irreversible damage. I currently have no physical damage – that is very good. But I’m still in pain.
My initial treatment plan hurt me a lot.
The immunosuppressive drug made me sicker, caused my hair to fall out and was not improving the disease. It has taken nearly 5 months to recover.
I have since been on LDN, adjusting the dose from 1.5 mg upwards to 4.5 mg.
I sincerely don’t know if it’s working.
I have tried to book appointments and ask questions but no one will answer them.
I have sat with my pain specialist begging for clarification to which I’ve gotten none. Yes, the increased pain comes with the weather, but we get a lot of weather systems here. No one can tell me if I will simply always be in tremendous pain when it’s going to rain or if I need to re-evaluate my treatment plan.
No one can tell me what to make of the pain.
It is an ache.
It is rarely sharp and stabbing. I’ve had a few bouts of that. This is the only area where I can hypothesize that maybe my meds are working to limit the disease progression – the additional stabs I was getting in my feet are gone.
I am not opposed to again increasing my LDN dose to 6 mg. But I don’t know if that’s a good place to start.
My doctors do not work together.
One of the reasons I am a complex patient is because management of migraine comes before everything else. This means that the typical first line treatment for Psoriatic Arthritis – NSAIDs – is out of the question. But should it be? I am in pain, there is some inflammation, would a short term round of NSAIDs be beneficial?
No one will tell me.
No will advise me.
No one will give me confirmation and no one will actively connect with the rest of my doctors to make any sort of decision.
So my “let’s try something other than NSAIDs” stands as a firm answer.
I’ve asked numerous times, just about any doctor I come in contact with, how should I know if the arthritis is being treated well.
They mostly scoff at me for not taking another immunosuppressive.
I feel like I am being bullied into taking more drugs that may strip more years off my life and force me to live with horrendous side effects because no one will listen to me. But no one will sit down and discuss these other immunosuppressive drugs with me either. I cannot simply follow orders to take a drug without understanding it.
Sure, the largest factor is not wanting to lose all my hair, but I also am now aggressively treating high blood pressure that the drug caused.
I am 23. I don’t need to die because of all the new conditions these highly aggressive treatments bring on.
But does this really mean I will have no more treatment?
That I will never understand this disease?
It physically pains me to push my vacuum around my space. And I have no options for relief when I do decide to vacuum. I just have to accept I will be in even more pain for the rest of the day.
Why can’t I get answers?
I had to push for a referral to a physical therapist to even get half of an answer. Because I am not confident that my google searches provide enough information, I need that confirmation from a doctor.
Surely movement can help in reducing disease progression. The physical therapist was able to confirm this, provide a few exercises, acknowledge that the exercises I’m already doing are very good, but he was not able to help me understand the pain I have now.
I ask again “is this pain and stiffness something I will always have now?” and he just didn’t reply. He instead told me my range of motion is perfect and I should work towards maintaining that.
No one will answer me.
It doesn’t help that my migraine pain is so severe that I am unable to really articulate the arthritis pain.
But I have asked about this as well. To every fucking doctor. And not a one can tell me how to understand my pain.
They want to know how it’s interfering with my life, but how do you ask someone who’s disabled by severe chronic pain who spends most of the time either resting or gently moving through the day how something is interfering with their life? My life already stopped. There is nothing to ground interference with.
The pain is annoying and that is all that should matter.
And I see no community. Surely it is there, but I don’t feel welcome or invited. I don’t see people my age and I don’t see my condition specifically represented. Most folks I do see only seem impacted by the physical psoriasis rash, which is the least bothersome part of this disease.
And so I feel helpless and isolated.
And I’m sure I am far from alone because so much of the chronic illness community expresses levels of untreatable joint and muscle pain.
Perhaps, the real issue here is that the answer is that it will always be here. The pain and stiffness won’t go away.
But if that’s the answer, I wish doctor’s wouldn’t just leave me in limbo.
Because it leaves me all alone. Suffering in silence.