How to Support People with Unseen Illnesses
By Jazmin Stearne
Living with a chronic illness is difficult. It can affect all areas of a person’s life and can lead to depression if one does not receive the proper support. I myself live with a few chronic illnesses. It is especially difficult when one cannot tell I’m in pain, just by looking at me. My illnesses are invisible, meaning they do not present with physical symptoms to indicate discomfort. It can be frustrating going through life with an “unseen” illness. So, what are some common unseen illnesses? Let’s dive in…
Common unseen illnesses
According to Northwest Primary Care, lack of validation was the most significant challenge for those with unseen illnesses. “In a series of focus groups conducted in 1999 by the National Pain Foundation, lack of validation (belief the patient was suffering what the patient said they were suffering) was identified as the most significant challenge faced by people in pain.”
Common unseen illnesses include, but are not limited to:
- Migraines and other headache disorders
- Multiple Sclerosis
- Rheumatoid Arthritis
- Major Depressive Disorder (and other mental illnesses)
- Chronic Fatigue Syndrome
- Digestive disorders (colitis, IBS, Crohn’s)
Challenges of living with an unseen illness
Imagine living in pain every day, and no one believes you, because you look “normal” to the outside world. Many of those living in pain do not fit the stereotype of a “sick person”. A lot of us appear to the outside world as healthy. When you don’t look sick, you will have a hard time getting other people (and doctors) to understand what you’re going through. This lack of understanding can be very frustrating. I think that is the most frustrating thing about living with a chronic, unseen illness.
There are many young people who live with unseen illnesses as well. Take myself, for example. I live with a few invisible conditions. On top of that, I am still rather young and I look even younger. I have gotten to the point where I don’t really care what people think. Over the years I have been told, “You’re too young to have this condition!” Or, “You’re too young to be chronically sick!” Comments like this deeply get to me sometimes. It makes me wonder, how young is too young to be sick? Of course, the answer is, one can get sick at any age. I’ve been sick for a long time. Because of this, I struggle with relating to people my own age. It can be isolating. Many of us with unseen conditions have depression as well.
Not only do we suffer physically, but as mentioned above, we suffer mentally as well. For example, many of us with chronic pain also battle debilitating brain fog. This can make it hard to remember important events, and even string sentences together. Brain fog is a mystery to most medical professionals, but I think it comes from being in physical pain all the time. It is exhausting.
Misconceptions: What others may think and say
I have listed some common misconceptions that I have either experienced in my own life, or that I’ve heard other sufferers talk about:
- If they look okay, they’re not sick: Most sufferers will hear this a lot. This makes me wonder, what does a sick person actually look like? I get the image of an older person with a wheelchair. This goes with what I was saying earlier. If you’re young and healthy looking, you’re not sick? Nope.
- Unseen illnesses are all in the mind: There are some people who actually say this! To make things more frustrating, sometimes lab tests come back completely normal. This leads to medical gas lighting and an even deeper feeling of disbelief from other people.
- The pain is the same every day: No! Pain levels will fluctuate from day to day. A person can be up and about one day, and in bed the next.
- They are lucky to be home all day: There is nothing lucky about living in constant pain. Being home all day with nothing to do (and no one to see) can lead to depression, hopelessness, and boredom. Honestly, I would be insulted if someone told me this. There is nothing fun about being home in bed all day!
- Chronic pain sufferers are drug seekers: This is one that personally gets to me. Those with unseen illnesses are often mistreated by those in the medical community. Many of us who visit the ER for chronic pain are labeled as drug seekers, myself included. This is especially true if you are a woman or minority. This can also be dangerous at times because a person can get denied much needed medication.
How to support those with chronic illnesses
So, you may be wondering, how can I support someone with an unseen illness? I’ve put together a short list:
- Try not to get frustrated: It may be hard to watch your loved one suffer without end. Doctors and medications may also be frustrating. Also, those with unseen illnesses might get irritable from time to time. We might lash out. If this happens, please remember that it is due in part to the pain and frustration living with a chronic illness can cause. It is normal for them to get needy, depressed, or anxious.
- Be there for them: If you know someone with an unseen illness, please show them you care. It is really easy to feel hopeless while living with daily pain. It can make you feel isolated too. Show them you care and that they are not alone. You won’t believe how much that will brighten their day.
Life with an unseen illness is hard. By raising awareness, we can live in a world with more understanding and compassion for those who live with unseen illnesses. If you or a loved one is experiencing an unseen illness, or is living with chronic pain, call or text our office today at 707-387-8479. Be well ~
Marcella. (2017, December 21) How to Support Those with Invisible Illnesses. Northwest Primary Care. https://www.nwpc.com/supporting-people-with-invisible-illness/