I’ve noticed that some people in various disability-related groups put a huge emphasis on their diagnosis as an identity and that many disability groups are siloed based upon diagnosis. I understand it, but it also worries me.
I understand the need to belong and be accepted, and that part of that process when it comes to debilitating conditions is to find others like you, with similar experiences.
Unfortunately, that can only be done once you have a diagnosis that you feel confident in.
What happens if you reject your correct diagnosis?
An example of not accepting a diagnosis was seen in Diagnosis, a special on Netflix. The final episode in season 1 featured a woman who likely has Functional Neurological Disorder(FND) but refused to see a specialist to confirm it.
She was more afraid of the label of ‘psychogenic‘ illness than she was of having unexplainable stroke-like symptoms.
On the positive side, she did undergo testing that conclusively proved that she did not have a stroke.
However, following the differential diagnosis model, this woman was left with two likely causes for her symptoms: Lyme disease, and FND.
She went to a Lyme-literate doctor(often they are infectious disease specialists) and they found nothing to indicate that she had Lyme disease.
Her next step should have been to see an FND-aware neurologist, but she shied away from that option.
Despite reassurances from others, she was more focused on the potential for the stigma against any mental-health associated words, than she was on actually having a useful answer and potential treatment for her condition.
This is especially frustrating because recent research is giving more and more proof that FND may be trauma-associated, but is not a psychiatric condition.
I feel bad for her since I have only been able to improve after having a diagnosis. Because she doesn’t have the FND diagnosis, she isn’t going to get the treatment she needs, or have a solid chance for improvement.
At the same time, I do understand aspects of her fear. She is black, and the US medical system is already extremely biased against people of color. With the propensity of doctors to discount and ignore psychogenic symptoms, I know that it can be an uphill battle to get proper treatment for FND, and that being black will make the process even harder.
I understand that it would be a struggle for her, and that embracing that diagnosis also increases her risk of having future symptoms that could have other causes discounted, and presumed to be FND.
However, her decision also has cut out the opportunity for treatment of whatever she does have, and I wish that wasn’t the case.
Is there a chance she doesn’t have FND? I suppose there is, but if that is the case, she’s unlikely ever to be diagnosed because the possibility of FND would need to be ruled out before anybody will look for alternative answers.
By refusing to look deeper, she has cut off her opportunity to get an answer, and so will need to keep living with the uncertainty and have an increasingly lower chance to better manage her condition.
If you are facing a tough diagnosis, think carefully about whether the information your doctor suggested doesn’t fit or if you don’t like the answer.
If it doesn’t fit, please keep searching.
If it does, do your best to accept your diagnosis and plan accordingly.
The psychological argument for diagnosis acceptance
Psychologically, it’s very important that you have a sense of what to expect. We as humans look for patterns in our lives and it’s troubling to not see them or be unable to make any real plans.
Not having a diagnosis is a growing problem and one that leaves many adults without a useful diagnosis feeling the need to constantly defend and justify their symptoms and complaints.
For many people, the diagnosis(and acceptance) journey is a space of conflict, with a potential for giving up and losing control, as well as a potential for huge, sweeping, life-saving changes.
It’s very normal to go through a grieving process for the aspects of yourself that you have lost. Loss hurts, and many disabling conditions leave people frustrated or unhappy about their new limitations. It’s normal, human, and appropriate to recognize this loss, and after that, the healing can truly begin.
Even if the diagnosis is severe, you at least know what options you have, how you can manage your symptoms and have some basic expectations for your quality of life. Realistic but optimistic expectations are vital for your mental health and emotional healing.
For many people, the illness and diagnosis is that push they needed to shift from surviving to thriving.
Recognizing a loss that could have happened, going through emotional trauma, or otherwise having run the risk of losing what makes your life valuable can make you deeply appreciate what you have and have all the more desire to push to make it happen.
By actively embracing your diagnosis and doing what you can to manage your condition, you are improving your chance of a better health outcome and improving your quality of life.
Creating your new normal
For me, the FND diagnosis led to me doing a lot of work on learning relaxation techniques, meditation, and readjusting my employment and career expectations.
I had to do some of those adjustment multiple times, but I did manage it all the best I could. My new normal also included getting over embarrassment about my symptoms – I’ve learned to joke about it when appropriate and generally calm the people around me down when possible.
My new normal is a life with meditation in bed most days(so I don’t injure myself), always bringing a distraction with me everywhere I go, and minimizing my time in crowded spaces(feeling crowded increases my likelihood of movement symptoms and increases my risk of catching a bug).
I don’t drive and no longer expect to drive again, but I focus instead on what I can do – walking around and using public transportation. I spend energy on gratitude exercises and focusing on the positive things in my life.
I see a healthy ‘new normal’ as one where your decisions and habits lead you towards improved health, wellness, and symptom management. It’s embracing your treatment plan and making your self-care a critical part of your day-to-day living.
In my case, that means extra rest when I’m sick, consistently developing a positive mindset and other stress-management techniques, and managing the stresses in my life(including other conditions I may have or develop) so my symptoms are less likely to occur, and when they do, they are less severe than they would otherwise be.
Regular exercise is part of that, as is making healthier food choices. But the most important part is moderation and balance in my decisions, priorities, and activities, while constantly listening to my body and respecting its needs.
For my partner Al, his new normal is monthly B-12 shots, taking appropriate medication, regular exercise(especially weight-bearing exercises to maintain bone and muscle health), healthy food choices(especially eating at least one serving of calcium twice a day), and regular check-ins with a few appropriate specialists.
Thriving with your condition
Your goal, my goal, every disabled person’s goal, I would think, is to be able to live our best possible life.
To be happy.
To have friends and loved ones you regularly interact with.
To feel free to explore the world around you.
To have a sense of purpose, a goal that you want to succeed in.
To do that, to do all of that, requires a lot of self-care, self-esteem, self-management.
Knowing how your condition works is an important step to help you build a dream that is possible, that you can still achieve.
It gives you a timeline to beat (I’m going to live longer than others with my condition or delay the progression as long as I can or celebrate the fact that my condition isn’t progressive), a sense of hope for the future, milestones to surpass.
If your condition is rare, you may get free treatments as part of a study, become an information resource to medical professionals studying your condition, or become a spokesperson for your community(rare diseases or the greater category your condition fits under). You also can create your own path.
With a more common condition, there’s a space for leadership within your community, as an educator to the greater public who doesn’t understand your condition, or for you to succeed in whatever your goals were before your diagnosis.
You also get so many chances and reasons to create habits to improve your quality of life.
At first, my FND symptoms and diagnosis translated into applying for Social Security Disability(SSDI), which was not an easy choice, but it is one that has allowed me to have a reasonable quality of life.
Later, as I learned more about social welfare systems, I was able to find the programs that could help me as I needed them(I have applied for SNAP, LiHEAP, and the Workability program at different times over the years), and have helped others to apply for the supports they needed.
I have learned a lot about meditation and Mindfulness-Based Stress Relief(MBSR), as well as healthier cooking, maintaining healthy relationships, and way more about healthcare and medical care than I ever hoped to know.
I also applied for and completed a graduate school program(technically two), all well after my diagnosis and going onto SSDI.
I believe everybody else managing disabling conditions has similar potential.
My hope, always, is that each of my readers is able to use this blog to shift their mindset and expectations in a positive direction. I want you, too, to find your way to thrive under the influence of your own condition.
Personally, I’ve found it important to receive, understand and accept my diagnosis. If something doesn’t feel right then I’m happy to explore but a diagnosis has been important for me physically and mentally. Physically because a line of treatment can be created. Mentally because I feel the constant search and mental disturbance of feeling like you’re not believed comes to an end and now you’re really doing something to improve quality of life. I hope the person you’re speaking about, one day decides to get checked for FND.
I agree completely – knowing what you have can help make everything else a bit easier. I know that I felt much better knowing I had FND than during the time I spent with an unnamed mystery illness. I hope that that woman sees an FND specialist too, because knowing makes life better – even when there isn’t an easy or obvious treatment option!
What a great post and much food for thought on the problems with mis or undiagnosis. It can really leave you stranded in more ways than one. thanks for bringing this to light!
Thank you Sheryl! Being misdiagnosed has to be incredibly tough, and living without a diagnosis makes it much harder to find a useful treatment.
The founder of FND Hope doesn’t actually have FND, she was misdiagnosed with it! She stayed with the FND community though, because that was the community that embraced her!
We all deserve to be happy – and the comfort of knowing what we are facing is helpful.
I was relieved when I got the diagnosis. For me, I was wondering if I was going crazy, literally. However, there are concerns about possible other diagnoses, like Lyme disease. I don’t know for sure I want to pursue it in that I’m not sure it will mean I can do much more than I’m already doing. I had the basic test with nothing that turned up on it, but from what I’ve been told, that’s not unusual and I’d have to pay $500 or so to do the very thorough test.
I understand that. If there were treatment options that would help, or if the diagnosis would give you a better sense of what to do, it might be worth it…but if it’s just some additional words on your medical charts with no practical applications, I can totally understand not wanting the extra expenses.