(Disclaimer: any description of medical conditions or definitions are from my personal understanding and research and are not a replacement for the advice of a medical professional.)

So today, I wanted to go over my experience with neuropathy. I’ve had neuropathy to some degree for around a year and a half, but in the past six months it has become something I have to consider daily.

So first, what is neuropathy? Neuropathy is when there is damage done to nerves (usually peripheral nerves, meaning the nerves in your limbs) which can cause pain, tingling, weakness, numbness, and loss of temperature or sensation. It often starts in the hands and feet and can “spread” upwards and further throughout the body.

My neuropathy consists of a lack of sensation; mainly I cannot feel most temperature or skin-level pain. If someone touches my arm, I can feel it to a certain degree. The pressure of their hand, a mild amount of warmth or cold sometimes, movement of their muscles. But it’s not the same as it was.

I first started noticing the lack of temperature sensation during showers. I would check the water temperature with my hand and it would be comfortably warm, but then I would step in and scald my back. I was in denial that something was wrong until one night I warmed up the water and tested it with my hand. It felt fine, but my hand quickly turned a shade of red I recognized as genuinely concerning. I pulled my hand out and when I closed my fist the skin felt tight in the way a burn does. I took our kitchen thermometer and tested the water temperature: 116°. For a frame of reference, hot tubs, by regulation, cannot go above 104° for safety reasons. I had come close to giving myself a second degree burn, and I now use a thermometer to check if the temperature is safe before getting in.

It works the other way as well. The weather got colder and colder but I still never felt like I needed a jacket. I would just… forget and then not notice. I walked out one morning and commented on how nice of a day it was, how good the breeze felt, etc. Felt like the “perfect fall day”. I was asked what temperature I thought it was, and I guessed maybe high 50s, low 60s? I checked the weather on my phone and it was 37°. I’ve had to set a rule that if it’s lower than 40°, I have to wear a coat, otherwise I won’t think about it. I’ve inadvertently given myself multiple colds this way. I will note, I use an app called “Weather Fit” to help determine what is the appropriate clothing for the weather, which I’ll cover more in my reviews of helpful apps post series coming up.

The most interesting part for me was losing pain sensation in my top layers of skin (epidermis). I can get scratched enough to bleed (a little, not pouring) and not notice until I see the blood. On the upside, I don’t have to worry about small wounds, splatter when cooking bacon, and getting blood drawn or IVs doesn’t hurt as much anymore, although I do feel it once it reaches the middle layers of skin (dermis). My job, which occasionally involves getting pinched or scratched, is marginally easier now. On the downside, however, I can get cuts and not know, meaning I don’t clean and dress them as quickly as necessary, leading to a higher likelihood of infection or delayed healing. If I get burns, I don’t feel them until they’re nearly second-degree burns.

I had a specialist knowingly burn me with an instant heat pack 3 times in one appointment because she did not believe someone my age had such “severe” neuropathy and I didn’t even realise until months later, because I thought the red on my legs was a result of the electrical stimulation during the test (it was an EMG). I warned her when she put the pack on my bare leg that I was pretty sure there was supposed to be a towel or something as a barrier and she just said “You can let me know if it gets too hot.” I took the opportunity to remind her that no, I have neuropathy, and likely would not be able to tell her. She just rolled her eyes and continued what she was doing. Eventually, after a long time (probably 15-20 minutes) it did indeed become very hot. I let her know and she looked at me smugly and checked the pack. She lifted it up, tested it with her hand, touched my leg, and said “You’ll be fine, it’s not too hot.” and put the pack directly back down where it had been. This repeated with other places on my legs and arms until she was done with the test. At the end of the test, she did concede that I had small fiber idiopathic neuropathy in all my limbs. I wasn’t sure why she had changed her mind until I had the burn realization months later.

Neuropathy isn’t easy to have – and sometimes it can be painful or legitimately dangerous. If you’re on the younger side and don’t have diabetes, most doctors will tell you you’re mistaken. But there are perks that I’ve taken to affectionately calling “cripple privilege” (like being able to cook bacon without worrying about the grease splatter, for example), and focusing on these helps me not only cope with my diagnoses with a bit of humor, but find a place for them in my life where they may take up space, but I choose the shelf on which they are put.