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Autoimmune disease flares: stress, grief, and management tips

Nancie Wiseman Attwater
Conditions
April 4, 2024
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Autoimmune diseases occur when the immune system mistakenly attacks healthy cells and tissues in the body. More than 80 recognized autoimmune diseases exist, including alopecia areata, rheumatoid arthritis, psoriasis, lupus, multiple sclerosis, celiac disease, scleroderma, and Raynaud’s. These conditions can cause a wide range of symptoms, making management crucial for maintaining a good quality of life.

Why the immune system attacks healthy cells is a bit of a mystery in most cases. When I was diagnosed with several diseases, starting with Sjogren’s Syndrome about eight years ago, my first question was, how did I get this? I searched online, did my due diligence, and never really came up with a satisfactory answer except perhaps trauma and stress, and now the disease symptoms are worse because of grief after my husband passed away.

Stress is a common trigger for autoimmune flares. When you experience stress, your body releases stress hormones like cortisol, which can exacerbate inflammation over time and weaken the immune system’s ability to regulate itself. This creates an environment where autoimmune diseases can flare up or worsen.

Lifestyle factors to manage stress and grief

It’s difficult to manage your own health when life gets difficult. By adopting some simple daily habits during challenging times, you can really make a difference in how your body responds to stress. The challenge is knowing what you need and how to make it work for you and your situation. It isn’t easy and requires a lot of time and thinking ahead.

Self-care

Relaxation techniques such as deep breathing, meditation, and yoga are all good ways to manage stress and grief. Getting adequate sleep is also important. The problem is when you are in the middle of a life event that is consuming your days; you need to step away and take care of yourself as well. Sleep habits often change during stress and grief, so resting is also helpful if you find sleep challenging.

Exercise and physical activity can help reduce stress and improve feelings of well-being. Your body may already be overwhelmed, so go slow. If you haven’t exercised, walking is a good way to start.

Seek emotional support

Connect with loved ones and good friends and get counseling as needed. You can now get therapy online, so it is much easier without the stress of an appointment to get ready for and drive to an office or hospital. You can do it at home on your computer and stay in your pajamas if that makes you more comfortable.

Manage your time

One task a day is plenty. There is no need to shop and work at the pace you did before. Break tasks into smaller, manageable steps to reduce the stress of overwhelming to-do lists.

Nutrition strategies for flare management

Nutrition is essential when managing autoimmune flares, and it is easy to get off track when life doesn’t go as you expected. The first thing is not to put too much pressure on yourself. Instead, when you can, focus on nourishing food that will support you in this time of need.

Focus on whole foods, including fruits, vegetables, lean proteins, and healthy fats. Include foods rich in antioxidants, such as berries, leafy greens, and nuts. And omega-3 fatty acids found in fish and flaxseeds can help reduce inflammation.

Many food service companies now deliver whole foods and recipes to your door, so if you are short on time or don’t have the mental capacity to prepare something yourself, it might be worth investing in some help while you manage your situation.

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It is also vital to reduce processed foods, sugary snacks, and excessive caffeine, as these can worsen your tolerance to stress. If you have any known food sensitivities, avoid these foods as much as you can, as your body is more likely to have a heightened response to such foods during times of stress and grief.

Managing autoimmune flares during times of stress and grief

Managing autoimmune flares during times of stress and grief requires a holistic approach that addresses both emotional well-being and nutrition. I encourage you to prioritize self-care, seek emotional support, and adopt an anti-inflammatory diet.

Manage medications

Autoimmune diseases often require many medications to suppress the immune system. Managing these medications and their side effects can take a great deal of time and energy.

Keep a diary of all changes and when a new medication is prescribed, keep that information on the medication and any side effects written down as well. You are your biggest advocate; by giving an accurate description of symptoms and reports to doctors, you can manage the grief/stress and autoimmune diseases as well as possible.

I take several medications, including a biologic once a month as an IV into a chemo port I had to have installed due to poor veins. Every medication I take has its list of side effects, and I always hope I’m not making my problems worse by taking so many of them. Immune suppression drugs are some of the hardest to take as they make your white blood cell count drop, therefore making you susceptible to every bug on the horizon. Some of them also cause weight gain, along with fevers, chills, and more joint pain.

Along with all of this and the constant medication management, including eyedrops six times a day, monitoring of blood work, and taking 15 pills per day needed to keep my joints moving and my lungs working, I became a widow about 18 months ago after taking care of my husband for about five years.

After Bill passed away, I was mentally drained and had no strength, as you would expect when a marriage of 30 years ends and one is left on one’s own. I knew it would be hard, and the days would be difficult with all of the paperwork and scrambling to plan a service, as well as taking care of a house and my dog. Bill was the cook in the household; I needed to find a way to make cooking part of my daily routine as well.

While this was happening, I realized all of my autoimmune diseases began to exacerbate despite my diligence with medications, as well as trying to manage exhaustion from lack of sleep and sadness. I moved twice within a year, selling and buying a house with each move. Yes, it kept me busy, and I was trying to look after my fragile mental health as well as my physical health.

Once the final move was complete, I found many days with nothing to do. This leads to way too much thinking and wondering what will happen next. A new symptom pops up, or a medication is prescribed, making me spend too much time on the internet diagnosing myself. I am a retired nurse, but I worked with heart patients, not people with rheumatic-type diseases. I do know enough to take the side effects listed with a grain of salt.

When looking at the long lists of side effects for a medication, I have to remember they don’t all apply to everyone, even if they are downright frightening. For example, hair loss, diarrhea, weight gain or loss, nausea and vomiting, gastrointestinal bleeding, mouth sores, and the list goes on for many.

When any of my autoimmune diseases “flare” for any unexplained reason, it can knock me back a bit. Stress and poor eating, not drinking enough water, and eating bar-be-cue potato chips for dinner don’t help either. Often medication needs to be increased for a while, prednisone usually the one, and then the side effects of it can make me feel worse. This is my least favorite drug of all. Weight gain, out-of-control eating, and messing with my emotions place it on my list of drugs I beg not to take.

Every time this happens, or there is a new diagnosis or surgery because of arthritis, I feel I never get back to square one. I always feel just one more step out of sync with the world or my life. I often wonder if a new diagnosis or new medication is going to bring on the end of my life. I wish daily to feel as well as I did a few years ago, but just can’t get back there.

I live alone with my dog in a beautiful community with lovely neighbors, but I am not good at reaching out for help or making new friends because the minute I schedule a class or plan a lunch or event, I often have to cancel. Autoimmune disease is the disease of cancellations. It’s disheartening so it’s just easier not to disappoint myself and the other person.

Autoimmune diseases are difficult to diagnose and treat. It may take many attempts to get the right medication combination, and frustration can easily grow. Seeing doctors can be difficult sometimes, as appointments with specialists are often difficult to get. By following these self-care guidelines, you can still manage the disease(s).

Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.

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