Having an undiagnosed illness is a terrible burden, but what makes it worse is having people around you that have no idea how to interact with you or help you. Here are some observations I’ve made along with some tips for those of you that have a loved one with this problem. For those of you still struggling and suffering from an undiagnosed medical issue, my heart goes out to you. I wrote this during my illness and have been tweaking it since then given my issues with cognition and word issues. (related to my illness)
What You Don’t Know About Having An Undiagnosed Illness:
The thing about having an undiagnosed illness is that most everyone thinks they know what you have and how to help. Almost every person you talk to picks out a few of the symptoms you’ve talked about, categorizes them into their own past experiences, and spits out a diagnosis. Usually when they really care, they even send links, articles, and detailed accounts and symptom lists to prove their point.
While their efforts come from a place of love and concern, this can start to feel rude, inconsiderate, and trite. The doctors keep testing, they keep poking and prodding. None of them can figure out what I have and yet people who have spent very little time getting to know my illness think they are experts, believe they knew my body better than I do, and apparently believe they have a gift allowing them to sense the inter-workings of the complex human body. More notably, my body.
I’m not sure what makes people feel as though they have this power or knowledge, but one thing is very clear: More needs to be done to inform people on the dos and don’ts of social interaction with those suffering from an undiagnosed illness. So here are some suggestions.
Dos and Don’ts When Interacting with Someone with an Undiagnosed Illness
1. Listen, Really Listen. A lot of times when we are in a conversation our minds wander or plan what we are going to say next. We struggle to focus on the words that are actually being said. While all we want to do is bring comfort by thinking of the perfect thing to say, sometimes we focus too much on our own thoughts while someone is talking. In reality, those of us with undiagnosed illnesses just want to be heard, not fixed by your perfectly chosen words.
2. Stop giving advice. No really, just stop. I know you think you know what I have. I know you think you have the perfect diagnosis or the perfect doctor, diet, exercise routine, supplement, stretch, vitamin, or miracle drug. I’m going to break it to you: You don’t. Okay, I’m not that pessimistic…Maybe you do. Maybe there’s this tiny chance that you somehow know what’s wrong and you can help, but 99% of the time you don’t. So instead of spending your energy on that small 1% chance idea you have, please instead listen to me and offer to help. (see step 3)
3. Pray for us, but also do something for us. Prayers, thoughts, and positive vibes are awesome. Most of us really do feel better knowing that people are thinking of us. What is amazing though is when you can do something for us. Bring over dinner, send a card, send a care package, come and do our dishes or laundry, buy a gift card, set up a massage, take us to a pedicure, go shopping for us, come and visit and spend some quality time with us. Please don’t just say, “Let me know if you need anything.” It simply isn’t enough. We don’t know what to ask for, we feel guilty enough with being a burden to everyone in our declined health, and we also are consumed by our illness. Please make specific offers and kind gestures. They really are the best way you can help.
4. Stop scaring us. Please keep your fear to yourself. I didn’t think I had to say this, but I have found in the last few months that most people don’t understand sharing their fear about my illness does not help me. It does not make me feel loved, cared for, or heard. Rather, it makes me feel even more afraid. To be quite honest, it freaks me out! Your fears are valid, so please don’t ignore them…but please don’t share them with us. We have enough to handle. Call a friend, a family member, or go see a therapist. Take care of your emotional needs because we can’t deal with them right now. We need beacons of hope, not alarms of our last days on earth.
4. Stop telling us it is all in our head. We are anxious as it is before being told that we are making our symptoms up or that it is psychosomatic. Especially when going through an array of crazy symptoms that are difficult to describe, telling us it is in our heads makes being sick all that more burdensome. We often have to explain to our doctors each and every visit what’s happening and defend ourselves when they accuse us of exaggerating or making it up. We often take tests and nothing shows up on them. It can start to make us doubt and question. Having to defend ourselves again when we talk to someone we love is just exhausting. As someone who has suffered from mental health issues for years now, I am aware of what it feels like to have a panic attack or a PTSD trigger related episode. This is not that. I promise, it isn’t.
5. Be Compassionate and Considerate, Always. When going through pain, weird symptoms, or testing, it can be incredibly taxing and emotionally draining. Talking to people who care and show empathy is one of the greatest sources of strength we can find. Even though major tests may come back as “normal” or “negative” it may not be a happy time for us. We are looking for answers and when we are hunting for them for a long time, it is daunting when no one seems to have them. Getting a normal result is great in that we don’t have to worry about a larger issue, but please remember that we then are left to wonder, “Now, what?” At some point, I was praying for a positive result just so I could find an answer. Please don’t assume that we are happy with our “normal” results. Instead, offer some compassion. Also, we sometimes are a little difficult to be around. We are irritable, upset, tired, in pain, and usually emotionally exhausted. Please be a bit more forgiving with us. This is a gift that we will be ever-grateful for!
So now that you have some tips, go out and use them! Be there for your loved one, remember that there is always hope, and keep being that person that can hold our hand and be there with us during this difficult journey!
Note: Any grammatical errors and missing words within this post are a result of my continuing battle with my illness. I am choosing to leave them even if I find them later on another read through after publishing. I revise and edit multiple times, but sometimes I miss things still. I’d like to leave them as a way of accepting where I am in my recovery.