5 Things I've Learned Living With an Undiagnosed Illness

1. It is not my responsibility to “look” sick.

If you’ve read anything about invisible illnesses, you’ve probably heard about the frustration surrounding the phrase “but you don’t look sick.” I’ve been experiencing symptoms for six months, but only began actively looking for a diagnosis two months ago. After countless blood draws, other tests, and randomly trying different medicines to rule out certain illnesses, my doctors assumed it must be a virus of some sort that they can’t test for. They kept telling me it would go away within a few weeks. I saw these doctors at least twice a week, and I wasn’t getting any better. One day, however, I looked slightly less pale, and the doctors assumed I was getting better. Even though I expressed that I was feeling worse, my doctors noted on my evaluation summary that I had “improved.” They said if I wasn’t better in six weeks, it couldn’t be a virus. Here I am, nine weeks later and not feeling an ounce better. It seems whatever I have is not going to go away on its own, no matter how well I look. If my primary concern was my paleness, then sure, I was getting a little better. My primary concerns, however, are the internal pains and extreme fatigue, which are not getting better. I shouldn’t have to “look” sick on the outside to have my internal symptoms be taken seriously.

2. My true friends don’t need a diagnosis to be supportive.

One of my biggest struggles with not having a diagnosis is figuring out what to say to people. What am I supposed to say when I have to cancel plans for that evening? That I’m too sick? Sure, that works for plans that are coming up soon, but what do I say when I have to explain why I might not be attending an event a month from now? When I tell people I am too sick, they usually assume that I have a cold or the flu. This assumption is fine for short-term purposes and for colleagues or acquaintances. This assumption does not work, however, for long-term purposes or for close friends/family. I have decided to be open with the people I am close to. I don’t have a diagnosis, but something is wrong. I am sick, and it’s possible I will continue to be sick for a long time or until I can get a diagnosis and treatment. Luckily, I have surrounded myself with an amazing support system that doesn’t need the name of my illness. They believe me when I tell them I am too sick to attend dinner that night or that I am too sick to make dinner next week.

3. Patience is key.

I’ve always been a pretty patient person, but this illness has definitely pushed the boundaries. Being chronically and invisibly ill can often feel like you are always waiting. I wait in the doctor’s waiting room; I wait to get testing done; I wait for the test results; I wait for my prescription to be ready; I wait for my doctor to come up with new theories of what might be making me sick; I lie in bed and wait for the next possible time to take more pain medicine. One of the hardest things for me to do is to wait for a diagnosis. Every time I get more testing done, I get my hopes up for finding an answer. I get excited and anxious for my test results, and so far every single thing has come back normal. No one has any idea what is wrong with me. As frustrating as it is, I know that patience is what I need to focus on. Getting angry is not going to make me better. I have learned that I need to be patient with my doctors, my life circumstances and especially with myself. It’s easy to be hard on yourself when you are not able to do everything you feel responsible to do. Again, I’ve learned that being mad at myself isn’t going to help anyone. Patience is key.

4. Appreciate the little things.

I recently had a lumbar puncture (spinal tap) done, and the procedure failed the first time. The numbing medicine did not take during the first procedure, so you could say I was in a lot of pain. On top of that, my doctor was not able to get enough spinal fluid out of my spine, so it was a failed procedure. I ended up having to get it done again the next day. This time they gave me a different numbing medicine, and it worked! The procedure went much more smoothly although they still had a hard time getting enough spinal fluid. I was oddly happy after my second spinal tap, and everyone was a little confused. I decided to be happy that the second spinal tap worked instead of focusing on the pain that still occurred.

After the two procedures, my back muscles were pretty torn up and my spinal fluid took a long time to replenish (causing a major migraine), so I wasn’t able to sit up or stand up for six days. When I was finally able to stand up and walk around my house, I was ecstatic. Again, instead of focusing on those six days of being stuck in bed, I chose to be thankful for when I could walk again. I have a newfound appreciation for being able to sit up on a couch and read a good book. In my opinion, it is crucial to appreciate the little things even though at times it can feel much easier to focus on the bad. I am currently appreciating that I have enough energy to sit outside and write this article. I am thankful that I do have doctors trying to heal me, even though they haven’t been able to yet. Can you imagine a world without doctors? Every day I wake up alive is a good day.

5. My support system is everything.

I really lucked out in the support system category. I have a mom who doubles as my advocate, researching medical conditions, taking me to doctors’ appointments and asking lots of questions, and making sure I am receiving the best care possible. I have friends who take care of me when I am away from my family at college. They run errands, bring me medicine/food, help me study, and are there to support me in any way they can. I wouldn’t make it through all of this if it weren’t for them.

It’s hard to live with a chronic and invisible illness, but its even harder to do it alone. If I could give advice to anyone dealing with something like this, it would be to establish a strong support system as soon as possible. I also think it is important to make sure they know how appreciated they are. I show my appreciation for them in any way I can, whenever I can. Having an illness is tough, but so is watching your friend struggle with an illness. If you are part of a support system for someone who is going through a tough time: thank you. Thank you, thank you, thank you.

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