As I have mentioned in previous posts, accepting your diagnosis isn’t as easy as it may first sound.
For most people, there’s a fair amount of time between when symptoms first occur and when they know what is actually happening inside their bodies.
There also is definitely a sense of loss involved in really recognizing and accepting your diagnosis—the loss of your “healthy you” identity—and that hurts. It deserves to be grieved.
To help you through your journey, I’ve written out these steps. Be aware that they are often repeated, and that there may never be a complete end to the process.
However, it is something that tends to get easier and more finely tuned over time. Basically, the adjustments are usually smaller and less demanding, and your time in each step tends to be shorter and and easier to get through.
Step one of accepting your diagnosis: recognizing that there is a problem
Usually, this is when the accident occurs or symptoms become severe enough that you agree that you may need medical attention.
My Functional Neurological Disorder (FND) started with shivering episodes. I ignored my symptoms until friends worried about the full-body spasms I had, and I reluctantly agreed to see a neurologist.
When Al shattered his acetabulum, there was no denying that he was seriously injured and so was taken to the hospital within an hour or so of his fall.
Each of us has our own length of time between when we first have symptoms and when we accept that something isn’t right.
Many people who have late-stage cancer diagnoses, for example, are diagnosed so late because either they dismissed earlier symptoms (which is often very easy to do), or because they failed to do regular screenings.
Step two of accepting your diagnosis: getting a medical perspective/feedback on the challenge
Your doctor agreeing that your symptoms warrant recognition, diagnosis, and treatment can often help you feel reassured that your condition is real and deserving of treatment.
With FND, I was initially told that it was a “stress response” and I was put on Clonazepam to reduce my anxiety. When I went home for the summer, I saw another neurologist who focused on seizure disorders.
Many FND patients see neurologists who don’t understand FND, and so they either fail to recognize it or describe it in an unhealthy way.
Also, many people with other conditions can get shoved into a “conversion disorder” diagnosis if their doctor isn’t willing to keep digging.
With Al’s injury, it took them several hours to find the break, since it was so unusual and difficult to see—especially because Al could not straighten his leg to give them a better angle.
Once his break was recognized, the orthopedic surgeon on staff recommended surgery at a different hospital because of the need for an orthopedic trauma surgeon.
Step three of accepting your diagnosis: Finding a diagnosis that fully fits your condition/symptoms
Sometimes this is relatively quick and easy; other times, this is a process.
Sometimes there are descriptive diagnoses that are unhelpful; other times the doctor hits the nail on the head at the first attempt.
With FND, I went to a couple of neurologists before I saw one who recognized my symptoms.
I also saw a couple of psychiatrists, a couple of urologists, and spent a week in the hospital to get diagnostic scanning and testing done.
Conversion disorder was suggested by my fourth neurologist.
Prior to that, the neurologists had mainly been ruling out possibilities.
Because FND sometimes is used as a diagnosis of exclusion, it can be really hard for patients to fully embrace it—and too many doctors can use it (and other diagnoses of exclusion) as catchalls when they are tired of looking or can’t find easy answers.
In Al’s case, while identifying his break only took a few hours, it took us almost a year to get to the root cause for the damage—the break was really a symptom of osteoporosis. And the osteoporosis was really just a descriptive diagnosis, as it explained why his bone broke but not the underlying cause.
Several specialists later, we eventually learned that the true cause was autoimmune pernicious anemia, which explained why he developed osteoporosis.
Likely, his prior brain injury masked other potential symptoms of the pernicious anemia
Step four of accepting your diagnosis: Understanding your condition
Once the doctor(s) can give you a solid diagnostic statement (rather than an unproven guess aka “tentative diagnosis”), which can take anywhere from one visit to many years, you need to agree that it’s a solid explanation that makes sense to you.
In the case of my FND/conversion disorder diagnosis, Dr. Mazzoni was a movement disorder specialist and was able to explain that there was no doubt that my symptoms fit in the “movement disorder” category.
He then was able to explain how my symptoms didn’t align with any of the major subgroups that he’d been trained to look for.
The unreliability of my symptoms and my distractibility in relation to them had him convinced that I had conversion disorder. It made more sense as he explained.
All my symptoms matched what he had to say and it fully explained all the variables.
Many neurologists don’t even recognize FND, and of those who do, many struggle to explain it to their patients.
With Al’s injury, we had several rounds of understanding his situation.
Initially, we had to learn about acetabular fractures and try to find the best possible orthopedic trauma surgeon to take his case.
Later, as he relearned how to walk, I searched for doctors who could come up with diagnostic tests that could lead to a useful diagnosis and treatment plan.
It’s often well worth your time to join social groups with people who share your diagnosis. It can help you better understand what you have and feel more confident that your diagnosis is correct (or give you alternatives if your doctor is wrong).
Often the work to understand your condition is where the acceptance process really gets a push.
For most people, as you take time to understand what condition you have and how it will impact the rest of your life, you may start to realize that your former (non-disabled) identity may be permanently gone.
Step five of accepting your diagnosis: Creating a treatment plan to help manage your condition
Your treatment plan is a hugely important step in your healing.
Generally, most doctor’s appointments will end with the doctor giving you some form of treatment plan—often something as simple as “take this medication.”
Sometimes your treatment plan is part of the diagnostic process (to rule out certain possibilities or to confirm a tentative diagnosis).
It is designed to manage symptoms or the underlying causes of your condition.
When I was diagnosed with conversion disorder, there were minimal treatment options.
It was still labeled as a psychiatric condition (now recognized as neurological, though often with trauma/stress as a cause/trigger), but naming the condition was thought to be helpful.
Currently, there are intensive PT/OT programs that are helpful, and many people with FND find improvement through antidepressants, Cognitive Behavioral Therapy (CBT), and/or Mindfulness-Based Stress Reduction training.
Many neurologists still don’t know about these options, and often oversimplify treatment suggestions to “go see a therapist,” which isn’t helpful.
Al went through multiple treatment plans as we worked toward his pernicious anemia diagnosis—initially following the postoperative procedures after his hip reconstruction, and then discussing the possible causes of his osteoporosis with doctor after doctor.
Once the root cause was identified, it turned out that his treatment itself is relatively easy—although lifelong. He simply needs B12 injections every month. It’s a relatively inexpensive and simple procedure (I’ve injected him some months), but if he goes without, the osteoporosis is likely to worsen.
Often, trying treatments can confirm your diagnosis, and if the treatment helps, it confirms that they correctly diagnosed the problem.
Treatment programs are more likely to be effective if you have embraced your diagnosis—both because your mind and body are aligned in the process and because you’re more likely to comply with the treatment process if you believe/see that it helps.
Step six of accepting your diagnosis: Creating your “new normal” and befriending your condition
As you go through diagnoses, understanding the explanations and trying treatment plans, you’ll also be mentally and emotionally evaluating both how well the explanations fit your experiences and how effective the treatments are.
Until you agree that the explanation aligns with your experiences and that the treatments are worth the costs (not just financial, but also energy, effort, and side effects), you’re not going to completely embrace your treatment process or fully commit to the efforts involved.
There’s a point where your brain flips from “maybe this will help” to “this IS going to help,” and that’s when you’ve fully accepted or embraced your treatment process. Sometimes several steps happen at once; other times, it’s slow.
Grieving who you were is totally normal, and to be expected.
You don’t want to get stuck there, but you do need to allow yourself time to grieve your former self.
For me, the FND diagnosis was almost instantly accepted.
Once I had the words “conversion disorder,” I felt much better, my symptoms decreased, and that visible change helped confirm the diagnosis.
I still often feel better after seeing a knowledgeable neurologist, especially when he puts my concerns over a new symptom to rest.
For many people with FND (and many other conditions that aren’t easily proven/confirmed), that acceptance process can take much longer.
There are a variety of reasons, but they include poor explanations by doctors, ignorance on the part of their medical professionals, or their own personal hangups about possibly psychiatric conditions.
If the condition is explained poorly, it’s harder to accept, and if you feel like there’s more testing necessary or that the doctor didn’t explore all options, it’s harder to embrace your diagnosis.
You may find yourself questioning every aspect of your diagnosis and treatment, which likely will increase your stress levels.
Chronic stress is already a major issue for any chronic condition, and mental and physical health seems to be intertwined for many people.
Al’s acceptance process was in some ways more straightforward. He had damage that could easily be seen on an X-ray, and was visible for close to two years afterward (in the form of using a cane).
Internally, he had to accept this new constant pain and that the pain would worsen under certain conditions (like cold and shifts in barometric pressure). He always has some degree of pain in the hip area, and likely will for the rest of his life.
He knows that whenever it rains, the pain tends to be worse, and snow makes the pain much worse.
The pain is part of his new normal. He doesn’t expect pain-free days, and lives with that adjustment. The main practical outcome is that he’s more cautious about how far he drives and what activities he participates in.
He still can live a good life, but at least some pain will stick with him no matter what he does. If he keeps up his B12 treatments, though, there’s no reason to think his life will be shortened because of this, or that he’ll be likely to break more bones.
Feeling confident in your diagnosis is very important in terms of helping you successfully befriend and work with your condition, instead of being in a constant state of uncertainty.
If you remain uncertain about your diagnosis or feel like the treatments you have aren’t helping, it may be well worth your effort to go back over your diagnosis process to make sure that you are correctly diagnosed.
Nagging uncertainty is unhelpful, and misdiagnoses do happen regularly.
When people are bicultural (such as raised by parents of two very different cultural identities), they often identify initially as one culture, then at some point identify fully with the other culture. Then they eventually find their own personal balance point, melding these two cultural backgrounds.
With becoming chronically ill/disabled, we go through a similar process—we initially identify as abled but temporarily sick. Then at some point, often shortly after getting diagnosed, we identify as “disabled” (often defined by details of our diagnosis/es).
Part of embracing your identity as a disabled person is to integrate all of it together so that you have your own self-identity—knowing your new strengths and weaknesses and having realistic expectations for yourself.
Step seven of accepting your diagnosis: Tweaking the process by actively focusing on new areas of concern
Once you feel like you have a handle on what you have and how to treat it, the baseline stress level of your life may well go down at least a bit.
As those stresses decrease, you may become more aware of/focus on other life stresses.
If you’ve been working or forced to take off of work, you may need to evaluate if or how much you can continue to work in the long run.
As you’ve absorbed the information about your condition, maybe there are new treatments you want to try out, or a doctor that wasn’t so helpful that you want to replace—or you generally feel that you need to improve your self-advocacy skills (wherever you are in the process).
With my FND diagnosis, I find that when I’m in or approaching remission, I often have the energy to look into additional treatments or alternative life options.
For example, it was when my movement symptoms calmed down that I was able to invest in pelvic floor rehab, find out about the MoRe program (in-patient intensive treatment program for FND), adjust my eating habits, and decided to go to graduate school.
Many of these would increase my symptoms a bit, but nowhere near as bad as they’d been when I was flaring.
These steps also led to an overall improvement in my quality of life.
I couldn’t have even contemplated them if I hadn’t already accepted my diagnosis.
Al has healed enough to be able to work, and knowing what he has and how it works allows him to comfortably continue working.
He knows that his primary medical needs are the B12 shots and checkups with a few specialists every six months to a year.
With his new insurance from his employer, we can tweak which doctors he sees and potentially slightly improve his care—but generally he just needs to keep getting tested to make sure that his B12 levels are reasonable and he isn’t low on other essential minerals to help his bones continue to strengthen.
I also, in all honesty, have gone through these steps with several other conditions—depression when I was a child and migraines over the past three years.
I go through a miniature version of this process whenever I develop new symptoms, as I need to go see the appropriate doctor to double-check if the new symptom is FND or something else. It gets a little easier, a little more fluid, and a bit less painful each time.
I believe in you—you can do this too!
Conclusion: You too can live a better life by fully accepting your diagnosis
You’ve most likely already gone through these steps at least once or twice already—don’t you deserve to fully embrace your diagnosis so that you can feel okay and get on with your life?
While the first step is to acknowledge that something’s wrong—sometimes that’s super obvious (like with Al not being able to get up after a fall), and other times it’s more subtle (many chronic conditions slowly get worse, and it’s not until we hit some form of crisis point that we actually admit something’s not right).
Seeing some kind of medical professional is the second step—though often this is something we do repeatedly until we get the right answer. Medical information is important, but the quality of individual doctors can vary hugely.
The third step is to get a correct diagnosis. Sometimes that’s a singular event, and other times it’s a long-term process. Be prepared to keep fighting until the doctor’s explanation seems to fully align with your experiences.
Step four is to understand your condition. Again, sometimes this is a quick and straightforward thing (okay, he broke the biggest bone in his body), and other times, it’s much more complicated. It’s well worth your time to do your research and truly understand your diagnosis—or why it’s incorrect!
The fifth step is to find or create your treatment plan, and then to follow it.
Step six is the full acceptance of your condition, when you really allow yourself to create a healthy new normal for your life.
The final step is to look over your life and see just what you can tweak next to improve your situation. I always think it’s important to look back over decisions we’ve made and experiences we’ve had to see what we can learn from them.
I do my best not to make the same mistake twice—and truly accepting your condition can be a big ask for yourself.
You can do it—I believe in you!