Undiagnosed Illness and Mental Health

Undiagnosed illness and mental health Amy Dodd Pilkington

Having an undiagnosed illness is frustrating. It weighs on your mental health. It means the future is uncertain. You have no idea if it will get worse.

There is an advantage to not having a diagnosis. While it still weighs on your mental health because of the uncertainty, it also means if it is something really bad you don’t know and that is, in my opinion, a good thing.

Opening up about struggles with an undiagnosed illness

I don’t like to talk about all of this much because I can feel the eye rolls. I once gave regular updates, and I stopped some time ago. Nobody would ever admit it, but let’s face it. Sympathy is not widespread and hearing about someone else’s woes is annoying, especially to those with no empathy. I get it.

I decided to write more about it here. 1. Nobody has to read it. If you don’t want to hear about it, skip it. 2. There are others like me who are dealing with an undiagnosed illness and mental health issues. They deserve to have a voice they can relate to. They deserve to know they are not alone. So, I’m going to rant about it today.

Multiple illnesses and ailments create a perfect storm

It seems there is always something weird happening. I can honestly say life is not boring since whatever this is appeared because there is always some fun new thing around the corner.

I was recently diagnosed with hypothyroidism and have started medication to get that evened out. This is not what caused my mystery illness, but everything that causes fatigue contributes to the severity of my symptoms. I once had periods of time I referred to as regression, meaning symptoms were worse. Then they would ease up and I would enjoy a bit more strength. That has not been happening. I have been stuck in regression for longer and longer periods of time.

A little backstory on my medical issues

I need to take a moment to give some relevant information. For 3 1/2 years now, I have dealt with mobility issues that have turned me into an ambulatory wheelchair user. Test after test has been inconclusive. There are no answers.

In January, it was discovered that I had a GI bleed that had been going on for over a year. It definitely explained bout after bout of anemia. That was corrected. I also had gallstones and pancreatitis. Also fixed, but that’s not relevant. The anemia added to my fatigue, and that made it harder to get through each day.

Regaining energy by identifying and treating medical issues

Fixing that GI bleed and the resulting anemia did help restore some of my energy and strength. Every little bit helps when you are running on empty and struggling to do the simplest things. I also feel like my hypothyroidism is straightening out and I am no longer fighting to stay awake during the daytime. This makes a huge difference because that ridiculously awful fatigue is going away.

It’s easier for me to do everyday tasks because I have more energy. I can function better. As I said, every little bit helps. Unfortunately, I have been stuck in regression for so much of the last year and a half that there are consequences. That makes it harder to get back to where I was before the last bout of regression.

Atrophy and all the fun it brings

I feel like I lose more with each period of regression. Every time I come out of it, I have lost a little more strength and ability. Part of this is weakness that occurs simply from not using those muscles. I have not been able to stick to physical therapy because of fatigue. Even if I had, being stuck in regression means I am not really capable of doing helpful physical therapy.

So, now I am dealing with atrophy. Atrophy is fun. It means that even though you are stronger and have more energy your body doesn’t want to cooperate because the muscles have gone into hibernation. Fun!

Shin splints? As if I didn’t have enough issues.

I have a weird issue right now, thanks to atrophy. If I stand for more than a few minutes my shins hurt so bad that I have to sit down. The muscles there have atrophied and balk at being used. It hurts, and that forces me to sit down. Have you ever had shin splints? That’s it. And I end up with that from simply standing for more than a few minutes.

Now, the treatment for shin splints is rest. The solution to my issue is to rebuild those muscles. See the problem? If I stop and start, it would take forever. I would likely be right back in regression before I was able to make a difference. There is no good choice here.

Making a decision on treating an undiagnosed illness

So, what am I going to do? I’m going to try to just keep working through it and rebuild those muscles. I’ll keep working until I can’t, I guess. Perhaps pain will shut it down. Perhaps I will be able to work through it. Hopefully, I won’t make it worse.

Losing abilities with every bout of regression

I need to work through it because every time this happens and I can’t rebuild muscle before going back into regression I lose more of my abilities. It gets harder and harder. It’s a constant battle to try to keep as much of it as possible.

I used to walk as part of my physical therapy. I’ve stopped doing that because I am afraid of walking too far and not being able to get back. My plans were to have someone fabricate a walking bike so I could stop and rest and be able to make it farther without fear. That hasn’t happened, so I’m not walking.

A world in a window

My entire world exists through two windows in my motorhome. Everything is n those two windows. They are literally my windows to the world.

I no longer get out to see the stars. My telescope has been packed away for the past two summers. Life is passing me by. I often feel my quality of life is so poor that it’s all pointless. My mental health suffers.

Independence and quality of life with an undiagnosed illness

The summers are much better than the winters. Even though I don’t go outside, I see the world through these windows. I am able to have a good bit of independence while I’m here. Once I go home, I am almost entirely dependent on others. In the motorhome, everything is close together and I can do so much for myself. Home is too big. Everything is too far.

My mental health suffers greatly because of my quality of life. It’s a struggle to find joy in each day. Many days I fall short and that’s not a good thing. If you’ve ever dealt with severe depression, then you know finding something to make things seem okay is crucial. There is very little I find joy in, and those few things are becoming too much trouble.

Undiagnosed illness, anger, and unhealthy coping mechanisms

Trying to survive an undiagnosed illness that affects your quality of life when you also have a mental illness is hard. It’s very hard. These stupid shin splints have caused me to think way too much about all I’ve lost and wonder how much I will lose in the future. Each day I am stuck in my mind is hard. It gets harder every day.

Anger has crept back in and I find myself snapping. I’ve talked about how anger is an unhealthy coping mechanism. It’s effective though, and it has kept me alive during some really tough times. I have done a lot of work on myself over the last few years. When all you can do is sit, you learn patience or lose your mind. Having an undiagnosed illness and not knowing why I must sit is frustrating. When you see me angry, I’m struggling. The angrier I am, the worse the struggle.

Thank you, or I’m sorry.

If you’ve read this far, thanks or I’m sorry. It’s definitely one of those two things. Either you read this far because you care about my well-being or you read all of this because you relate. Thank you if you care. I am so very sorry if you relate. I wouldn’t wish this on anyone.


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♫ And stay away (I’m hearing voices all the time up in my mind) (I’m hearing voices and they’re haunting my mind) And stay away (I’m hearing voices all the time in my mind) (I’m hearing voices and they’re haunting my mind) Black out days I don’t recognize you anymore ♫

Things will be fine. (Maybe.)

Some days my mind is my worst enemy. I feel like I’m drowning. I feel like I’m disappearing. My physical health and mental health are so intertwined, and having an undiagnosed illness does not help. I’m just along for the ride. I don’t like it. Let me off this ride.

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