This article was first published on the Global Lyme Alliance blog on March 20th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
Last summer Global Lyme Alliance sponsored an event in Chicago called the Sublyme Soiree. I invited my brother and sister-in-law to come with me. During the event, a doctor spoke about the impact of Lyme disease on his patients. I was so grateful that my family had made the effort to come to the event and that they were able to learn about the impact of Lyme from someone other than me. It was the first time in a long time I truly felt seen.
Invisible illnesses are not easily detected by our outward appearance. Because our illnesses are invisible we often feel invisible to the outside world. We are often mistaken for being "all better" or "not very sick at all." In addition, many people with invisible illnesses, like chronic Lyme disease and autoimmune disorders to name just a few, experience flare-ups followed by periods of relief, which leads to further misunderstanding. If you have a loved one who has an invisible illness here are some ways you can show them that you care.
7 ways that you can show someone with an invisible illness that you “see” them:
1. Never underestimate the power of snail mail.
You know the feeling when you open up your mailbox and among the bills and junk mail, there is a card with your handwritten name on it? It always brightens your day. It's nice knowing someone took the time to pick out a card or postcard at the store, write in it, buy a stamp and send it in the mail. Sending a card, postcard, or care package to someone who is chronically ill shows you care. Who knows? Maybe your card will arrive when the person is having a bad day and your compassion will make them feel less isolated.
2. Find a way to have fun on their terms.
If you invite someone who's chronically ill to an amusement park they are likely going to say no. If you invite them to tea, a short walk by a lake, or to a movie, they are more likely to say yes. It depends on their stamina. Some days are better than others. Try to think of an outing that doesn't require a lot of energy. If the person is homebound, maybe you can binge a television show with them while sharing a pint of ice cream.
Remember chronic illness is inconsistent. On a good day people with chronic illness are able to do more but on a bad day, they may not be able to leave the house. The problem is we don't know when we will have a bad day. It makes it difficult to plan, so try to be understanding if the person needs to change or cancel plans.
3. Never question a symptom or diagnosis.
People with chronic illnesses are constantly being questioned by those in the medical field and also by people close to them. Frequently, we are questioned about our fatigue and pain—two things that can't be seen and that change from day to day.
If you want to show a person with chronic illness that you care about them, take them at their word. If they say they are tired, they are tired. If they say they are in pain, they are in pain.
4. Ask about triggers.
Each person with chronic illness has different triggers. Personally, I'm triggered when people joke about my diet choices or comment about antibiotics being bad for me. The reason these are triggers for me is because I don't want to be on a restricted diet or take antibiotics, but both make me feel better, so I do what I have to do.
For a person with chronic illness, each treatment decision comes with careful consideration and a great deal of anxiety. Once that treatment decision has been made, an outsider adding their two cents only causes more anxiety on behalf of the patient. If you are seriously concerned about a person’s treatment decision there is a way to discuss it without judgment.
5. Learn something about their illness.
There is a wealth of information online about every illness. Take a few minutes and read up on what your loved one is going through from a reputable source. If your friend or family member posts a link with information, click on it and gain some new knowledge.
Recently, my dad alerted me to a new documentary on ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). I didn't know he knew that was one of my symptoms. It meant a lot that all those times I was talking about my fatigue, he was listening and wanted to learn more about it.
6. Attend an awareness event or donate to the cause.
If a loved one asks you for a donation or to attend an event for a cause, do what you can to make it happen. We all know how difficult it is to ask for money or time from someone, and when it is related to a friend or loved one's personal health challenge it can make them feel even more vulnerable. This, of course, is not always possible. There may be financial and time restrictions that are insurmountable. It is not an expectation, but know that it will mean a great deal to the person.
7. Don't treat them like they are a different person.
When someone is diagnosed with a chronic illness they may change their behavior, but remember they are still the same person. Try not to avoid them or treat them with kid gloves. We may feel different in many ways, so we count on those close to us help us remember who we are.
At the end of the day, one of the most effective things you can do is ask yourself, "If I were sick, what would I want someone else to do for me?" Your friend or family member won't expect you to do everything on this list. They will be pleasantly surprised if you do one or two of these things.
"Have compassion for everyone you meet, even if they don't want it. What appears bad manners, an ill temper or cynicism is always a sign of things no ears have heard, no eyes have seen. You do not know what wars are going on down there where the spirit meets the bone." - Miller Williams
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.