Today I’m going to be talking about coping with having an undiagnosed illness – one where the doctors can’t work out what’s wrong (or may even not believe that anything is wrong at all).
I think I’m pretty well equipped to write about this subject; it took years for my brain tumor to finally be diagnosed, including almost a year where I had a resting heartrate of 140 beats per minute (for context, about 60 – 100 bpm is normal, so that’s pretty darn fast) for no reason that anyone could explain. Then, more recently, after I gave birth to my son I experienced unexplained thyroid issues that took a number of months to diagnose.
What it feels like to have an undiagnosed illness
Having an undiagnosed illness is really stressful (unsurprisingly). It can be helpful to break down and acknowledge some of the key reasons why that is the case, and you may find this list helpful to share with family and friends if they’re struggling to understand what you’re going through. I’ve also written a follow-up post with tips to cope with having a mystery health condition.
The uncertainty is frightening
Often the options for what’s causing your symptoms may include life-changing and/or life-threatening illnesses, such as cancer. It’s very scary to live with the threat of that hanging over you, and it will affect those closest to you as well. It can be difficult to carry on going with your day to day life with that fear constantly in the background.
It’s surprisingly busy and tiring to manage healthcare tests and appointments
It is stressful, unpleasant and often exhausting to go through repeated sets of diagnostic tests. Not to mention that it can feel like a full time job to be constantly chasing up the hospital for test results, next steps plans, and appointments.
It’s hard and depressing having to adjust to having to change short and long term plans
You may have to make changes to your life or future plans based on your symptoms, with no idea whether you will ever be able to go back to how things used to be, or whether your plans will ever be achievable. It can be depressing feeling “left behind”, especially when new symptoms that you initially hope will clear up quickly seem to be sticking around indefinitely. You may feel like you’re mourning the loss of long-held ambitions or dreams.
It’s tiring to keep people updated
Friends, family and employers expect regular updates and it can be difficult to keep telling people that you still don’t know what is wrong.
You can end up minimising how sick you really are
In the absence of a diagnosis, it can be easy for other people to (purposely or unconsciously) minimise or be dismissive of how sick you really are. It can be difficult to get enough support, and it can be frustrating and upsetting to find that people close to you don’t seem to be taking your illness seriously, or even forget about it at times.
Linked to the above – it can be easy for YOU to underestimate your illness. It’s easy to beat yourself up for not getting things done or not keeping up with your normal routine, when there’s nothing “officially” wrong with you. You may worry that nothing is really wrong, that you’re just lazy, or weak.
You can feel like no-one is listening
You may feel that friends or family members don’t understand what you’re going through, but it can be even worse if you feel that your doctors themselves don’t take your symptoms seriously or are not listening. It can be very depressing and stressful to keep going back to your doctors trying to get them to investigate your symptoms.
l’ve written previously about techniques you can use to get your doctors to listen to you, which you may find helpful.
It can be hard to manage existing responsibilities
It may become hard to manage your existing responsibilities – not just work, but parenting or caring responsibilities, or even smaller things like managing bills, life admin and keeping the house clean. Tasks that haven’t been done can build up, causing a high level of background stress and/or guilt about not doing a good enough job.
Money worries with undiagnosed illness
Chronic illness often brings money worries with it. Depending on where you live, you may be dealing with stress and worry about medical insurance and whether it is likely to cover the cost of your diagnostic investigations and subsequent treatment. But sickies everywhere will worry about employment, having to take time off work, and whether continuing to work is realistic in the long term, given your symptoms.
Your Experiences of Mystery/Undiagnosed Illness
Phew! That’s a lot to deal with. Have you experienced living with an undiagnosed or mystery health condition? How did it make you feel? Let me know in the comments! I’m planning on following up this post with a look at coping strategies for mystery conditions, so let me know your thoughts.
3 thoughts on “What It’s Like To Have A Mystery/Undiagnosed Illness”
I’m in the mist of a newly diagnosed rare disease, Fibromuscular Dysplasia, that I’ve had most likely all my life. I’m experiencing a lot of the things you mention, with one big difference. It’s a for sure what it is. In that, I know, at least self care that I need to put in place and it can then be monitored from this point on. While it’s scary, it’s a scariness that is at least named, thus I can face it. Unknown, is all that but you aren’t ablet to face it.
I was nodding my head to so much of this. It is scary, overwhelming and having to go through tests and appointments can be so anxiety-inducing.
Yes to all of this. You’ve hit everything! I lived with a mystery illness for close to 20 years before learning I have AS. I remember feeling relief that it had a name, and when I called my mom to tell her, her first comment was, ‘Thank goodness it’s not RA.’
Well, we were wrong on that. It has proved to be just as disabling as RA and very invasive. It still terrifies me. I still jokingly refer to myself as a mystery patient with my docs here in Taiwan because it seems to make them feel a little more relieved when I enter appointments and I can barely raise my head, but my husband keeps telling me it’s not my job to make them feel better. It’s their job to stay on top of things and warn me of things to come.
My biggest worry, always, is money and how I’m going to come up with it for medications if I lose my company completely or if something happens to my husband. I have savings, but the new meds I’m on will go through my savings pretty quickly, so the pressure to have diverse streams of revenue coming in at all times is always there. It never lets up.
I really like how you laid this post out! Great job!