Listening to her describe a recurrent dream in which a test finally uncovers the illness explaining her extreme fatigue, I felt overcome by her sadness. Thirty five years ago, after three years searching for a diagnosis, I was almost joyous to get a diagnosis of multiple sclerosis. It took me a few years of living with the now named disease to see how little this information did for me. My clients tell me I’m not alone.
Why the search for the diagnosis? I think it’s because we have certain assumptions:
1. If my symptoms have a name, people will believe I’m sick and that will make it easier to talk about it. It’s difficult to talk about unpredictable and invisible disease regardless of whether it’s named or not. People don’t question the existence of cancer or heart disease. But my clients — such as the one with severe fatigue from the heart medication that keeps her alive or the one on a 5 year drug regimen course post cancer surgery — will tell you it takes much practice to get the support they need. Those with autoimmune diseases that can be diagnosed by tests (such as rheumatoid arthritis or multiple sclerosis) find the ongoing conversation is tough. (See my booklet, Are You Talking? for challenges and tactics.) And those who live with diagnoses such as CFIDS, Fibromyalgia, chronic pain or even a sleep disorder, diagnosis not based on objective findings, get raised eyebrows and unasked for opinions when they bring up their health challenges.
2. If there is a medical diagnosis, then I can get treatment so I will feel better. Even with a disease with treatment options, finding the right one can be a windy and torturous path. Ten years after MS diagnosis, when I was diagnosed with ulcerative colitis, my neurologist said, “At least this disease is treatable.” But what happens when the drug therapy options don’t work, as in my case? I hear how the search for effective medication takes a physical, emotional and financial toll. The bottom line is that there are too many diseases and medical conditions with names but few effective treatment options.
3. A diagnosis with treatment will lead to a cure that gives me back my life. Chronic (defined as habitual and a long time) is always with you, even if it’s quiet for a while. Illness is lousy (there are other adjectives I’d use but I don’t want to offend anyone) and no matter what spin you put on it, life is less fun with it. Chronic Illness means that your body is unreliable and a source of difficulty.
I suggest that when medical appointments become your full time job and you’re only running into solid brick walls, it’s time to put the search for the holy grail, the diagnosis, aside. What would it be like if you put all that energy and attention into focusing on what you can do to manage the symptoms and get on with your life? I know it’s not an easy shift. But I’ve seen that with help and hope, it is possible
sandra Holland says
While I agree that people should focus on what they can do but for me being given a diagnosis has been very important in my decision making about my career, I have just been told I have 2 herniated discs in my cervical spine one of which is touching my spinal cord,narrowing around the nerve root on the two herniated disc’s plus one other. I have 3 in my lumber spine. all inoperable because it is considered too dangerous. degenerative disc disease throughout my spine including thoracic, osteoarthritis at all levels of spine and fibromyalgia. I am a mental health nurse and due to the potential risk of being injured in the line of duty could lead to paralysis, I have been advised by my consultant that I can no longer risk clinical practice. Until I had my car accident I was not aware of the problems with my spine, the accident exacerbated my pain and condition with my disc’s and caused immobility and affected my activities of daily living and ended my newly qualified nursing career just as it had started. It does not mean I am giving up on working, I just have to retrain and find a career which I can carry out with serious limitations of mobility, lack of effective treatment as epidural is also not recommended for my cervical spine again due the dangers and limitations with strength in arms and hands. It has also given me more knowledge to fight the limitations safely. I refuse to settle for the sick role and give in to disability. I have too many year of working life before retirement and can’t afford to struggle financially. Lack of diagnosis could potentially leave me paralysed, and the a patient left with feelings of guilt for a potential aggressive incident during episode mental ill health that would avoidable due to knowledge and diagnosis and me recognising my limitations and accurate risk assessment for myself and other. It is I feel dependent on the type of career you have and the limitations you illness or disability creates.
Rosalind says
Thank you, Sandra, for sharing your experience. I wrote this post to generate this discussion. Honestly, I don’t believe that there’s a one size fits all solution but I find it too difficult to write a post with all the points that need to be addressed. Thank you for sharing this and I wish you well in your career move.
Ellen says
As usual your post hits some very good points. What is happening to me is that one Chronic Autoimmune disease has lead to another and another. And to add to it I just happen to be one of the lucky people who never responds like anyone else. My body always has the unusual symptoms and always reacts different to the medications. I went to a doctor at the Univ. of Penn and I have one more diagnosis this week and there really aren’t good solutions for this one. I now have 5 diagnosis that all have overlapping symptoms and no cure. At first I just go through a shock period and unbelievable that it is happening again. Then I get mad and then I accept. I just try to forget and move forward with life until the next symptom. Knowing the diagnosis doesn’t really help anything but at least I know what it is and what the next symptom could be. The only thing not good about not having a diagnosis is that you might ignore or put up with a symptom that could be treated or if left untreated could cause a problem. But spending all you energy and time and money looking for the exact diagnosis isn’t helping your health either. Having fun and exercising might take care of the problem also. It is just so complicated and tricky to know when to seek help and when to just go to work. Nobody has answers. You have to do what works for you, what makes you comfortable, what will give you the energy (mental and physical)to move forward not stuck with the diagnosis. But the thing you can be sure of is that there isn’t enough time to do it all so choose wisely.
Rosalind says
I couldn’t have said it better. Thank you for sharing your experience. I believe we all get ideas from each other — and motivation to do something different if what we’re doing isn’t working so well for us. Those ideas get generated from posts like these, working with a coach like me, or just processing on your own. But the point is to keep plugging away!
Karen says
I am 58 and relatively OK with no diagnosis – finally. I do sometimes wish I had a name for it for many of the reasons you mentioned. My symptoms started in my late 20’s. In my late 30’s, I was diagnosed with MS. As you said, getting any diagnosis was a relief. 10 years after that, I was told it wasn’t MS. I went a few years with no diagnosis, and then was given an even more rare diagnosis. I was told it might be good to see the world renowned specialist who knows all about the disease. At my own expense, I flew out to see him. He dismissed the diagnosis, and basically left me feeling silly for even bothering him. After so many years of trying to get answers, this somehow felt like the last straw. I came home and declared the search for a diagnosis as being over! I finally accepted that having a name didn’t matter. I recognized that there is no cure for most neurological disorders. Symptom management is the treatment in most of the cases and I have excellent doctors who keep me functioning. I don’t know if I will always feel this way, or if some day I will follow yet another doctor on a wild goose chase. But, for the time being, I’m OK.
Rosalind says
Your story is too familiar and sounds difficult. It’s sad that the specialist left you feeling dismissed and I can imagine your frustration. It’s hard to say that a name would make a difference regarding the treatment but it sounds like you’re doing all you can and managing where you can. Thank you for sharing.
gin says
For a year and a half I have struggled with a very bad lung/heart problem.
It began with a high twitch fever and I havent been the same since
Many doctors just say inflammation is high-one mentioned rheumatic fever which I had suspected but then he said I had antibodies but not the other signs.
Anyway, I cry every day and cannot teach anymore.
Thanks for listening
Ginny B
Rosalind says
Dear Ginny
I am sorry that this is happening to you. I, too, had to leave teaching when I was too sick to function in front of a group and it was hard and sad. It’s especially difficult not to have a diagnosis and good treatment options. Too true for too many.
I also hear the need to cry. Is that all? Are you able to have some satisfactions in your life? When you are ready, you might ask yourself: what can I do with my life, as it is, NOW, on a daily basis (no matter how small) so that I feel I can take better charge?
I wish you strength with this. Let me know if I can be of service in any way.