Chronic illness can be difficult to comprehend. Emotions can run anywhere from relief (knowing what is wrong, especially if you are diagnosed after a long period of symptoms) to grieving the perceived loss of what your life was before the diagnosis and may not be in the future. Many chronic illnesses require lifestyle changes and this can be frustrating.
A Personal Perspective
I was diagnosed with rheumatoid arthritis in November 2017, a month before my 35th birthday. I had been struggling with extreme joint pain, swelling, and fatigue off and on for at least a couple of years at that point. It was infrequent at first but then became almost debilitating, so my Primary Care Physcican ran blood tests to start the process to see what the possibilities were.
As a result of the blood tests and the continued symptoms, I was referred to a rheumatologist, who did further testing and determined that, in fact, I am in the early stage of RA.
This runs in my mom’s family- my grandfather had it, my sister has lupus, my mom has arthritis, and my grandmother had fibromyalgia. I was not exactly shocked to get this news. I was relieved to know what was going on. I was ready to start medication and learn what I could do to feel better.
I had to wait a few months to start medications due to regulating thyroid medications- in May 2017, I had a partial thyroidectomy. The thyroid medication had to be stabilized before any RA medications could be started.
I finally started one in early 2018 and have been able to be more functional. I’ve also added an anti-inflammatory medication to help with swelling and inflammation in my joints. It is less than fun to have RA, but I try my best to not let it hold me back.
There are days that I can barely move around my house because of the pain, but there are also days that I can do almost anything I could before my diagnosis. I try to stay positive, take my medications, and stay active.
If I am in a lot of pain, I ask for help from my kids (they are preteens and a teenager so they can do a lot) and/or husband. They understand that some days are harder than others.
Where is the Connection?
According to the Cleveland Clinic, some patients with chronic illness overlook the symptoms of depression because they think it is normal.
Some of the symptoms- fatigue, appetite issues, insomnia, and concentration problems are common side effects of the illness itself and/or medications used to treat them. Fatigue is one of my largest problems, but it’s not due to depression.
Depression is a common complication of many chronic illnesses. It should be treated alongside the illness. The illness may affect how the person sees themselves or even how they relate to others. It can be hard to see yourself the same way when it becomes difficult to walk, talk, complete everyday tasks, hobbies, etc.
Those changes can be stressful and bring about thoughts of sadness and despair. It is up to the treating physician and patient to decide if those feelings are normal, as in adjusting to a new way of life, or so intense that the patient may need medication and/or therapy.
Sometimes, once the patient’s main issues are relieved, so is the depression. For example, when someone is in a car accident and their leg is broken, they can become temporarily depressed while they are not able to do many things they are used to.
This is a kind of situational depression. Once the patient is out of their cast and healed, the issue may be gone. They may have some residual anxiety, maybe even PTSD, but this can be addressed with ongoing therapy.
Humor can go a long way when it comes to trying to adjust to life with a chronic illness. For example, Selma Blair shared a bronzer tutorial on her Instagram. She has Multiple Sclerosis and has difficulties with her mobility. The video showed her taking a kabuki brush all over her face and saying “Done”.
She is laughing and basically making fun of herself. Some people may not find it funny, but I thought it was great. There is not a lot she can do about having MS, so she figures she may as well have a bit of fun. I share that thought- I use my own hashtag, #RASucks when talking about the bad days.
The Hidden Emotional Toll
I’m a reader and fan of The Mighty. One article highlighted the emotional side effects of having a chronic illness, the things that many people don’t see.
- Guilt. This is at the top of the list for me. My kids have been great with understanding my limits, but they’re still kids. Sometimes they get a bit frustrated at me being too tired and/or in pain to do things, but after going with me to a rheumatologist appointment, I think they might finally be starting to get it. Feeling guilty about missing things, not being able to work, etc. can take a large emotional toll on people with chronic illness.
- Crankiness. I experience this with migraines, but it comes out a lot more on bad pain days. I am not normally a cranky person, so I try to reign it in when I can. I’m working on thinking more before I speak and deep breathing helps. Personality changes are a possibility, and you don’t always see them coming.
- Isolation. I don’t necessarily feel this, but I am aware that others do. This likely contributes to depression in many chronically ill patients. When you don’t have support, it’s hard to talk about pain, fatigue, or even doctor’s appointments, bills, etc. The feelings of isolation can be a terrible blow.
- Anxiety. When is my next flare going to happen? Will I be able to do anything? I do have these thoughts, but I try to focus on what I can do that day, not what might happen next week. I don’t even worry about what my next set of labs may look like. Anxiety about your health can be consuming and can spiral fast. At this point, it’s time to take a few deep breaths and try a calming technique. The main thing I do worry about is how the RA will progress in the future, which is normal.
- Self-pity/anger. Many chronically ill patients have this thought process occur at some point. I’ve never been truly angry about having RA, but I’m not thrilled either. I know that I’m stuck with it, there is no cure, and all I can do is take care of myself the best I can so it doesn’t progress rapidly. I do feel bad for myself sometimes, especially if I am in a flare. This can be a hard mindset to get out of, but there are ways to distract yourself- reading, watching a movie, talking to someone, etc.
Living a good life with a chronic illness is possible- depression doesn’t have to take over your life once you are diagnosed. It is normal to be upset, even sad about the changes that you will see. If your sadness becomes too much to bear, please see your doctor for help. It is okay to do so, you are not alone.