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How to Thrive with an Autoimmune Disease

Living with an autoimmune disease may feel like you are drowning.

When I was first diagnosed with an autoimmune disease in 1977, I coasted through a few months before they settled on a diagnosis.  First, doctors believed I had psoriatic arthritis.  Months later, they decided on seronegative rheumatoid arthritis.  During those months of not knowing for sure what disease I had or what the rheumatologist planned to do about it, I blithely went along with whatever was suggested. 

Neither I nor anyone I knew had ever heard of PsA and very few understood rheumatoid disease at all.  The rash and pain in my big toe that started it all eventually disappeared.  Because I had lived with various painful joints much of my young life, it took some real soul-searching to figure out what really hurt and how badly.

Once I was told I had RA and was prescribed a non-steroidal, anti-inflammatory drug, I began to study the disease in earnest.  I didn’t like what I read!  With children to raise, including a toddler, I took the pill as prescribed and mostly ignored my aches and pains.  I did not have time to worry about my future or what might or might not happen to me.

Losing Myself

The anti-inflammatory pill stopped working.  That was the first time I really noticed that I had lived so much of my life in pain and had begun to enjoy living without it.  When that magic pill no longer helped, I looked around and wondered what was going on.  What would I do without relief from the never-ending throbbing?

My doctor switched me to another drug – then another when that ceased working.  Eventually, nothing helped.  I played tennis once a week with 3 ladies and could no longer keep up because of the pain.  Walking and biking for exercise was not pleasant, and I began to emotionally withdraw into myself.

I was afraid to share too much of this disease with my husband, and that was a mistake.  I’m not sure if I was afraid of how he would react, or maybe part of me was embarrassed that I couldn’t do all I was expected to do.  So I stuffed as much as possible – the pain, the fear, the stress – inside and just plodded on.

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A new rheumatologist told me I should accept the fact that I would one day end up in a wheelchair.  That was the day I felt a change come over me.  I was raised to be a nice, Southern girl and never talked back to my elders. But I lost it that day.

I looked at that man and said, “Like hell I will!”  And I removed myself from his office.  I cried all the way home, and it took several hours before I controlled my emotions.  But that was also the day I finally grew up to advocate for myself in life.

A Better Way to Cope with an Uncertain Future

My initial reaction to the disturbing news was to withdraw into myself and stubbornly try to fight my way through it all alone.  This is not the best way to face a future with an autoimmune disease.  If I could only make one suggestion for living with a potentially debilitating autoimmune disease, it would be to find a support group. That group might consist of people who live in your area and deal with your medical issue. Or it might just be your family. Whichever route you choose, find someone or a group of like people to understand, listen and support you.

Other suggestions that may help improve your life and your future include the following:

Educate Yourself

Read every piece of information you can on your particular disease. The internet is full of good information. Social media groups abound for people with various autoimmune diseases. Your rheumatologist or whatever specialist treats your condition should be the first person you go to for information and help. But knowledge is the key to helping yourself. Your specialist probably won’t help you deal with the social aspects of constant pain. His or her job is to help eliminate that pain when possible. He likely won’t help with the lack of family support.

Family Support Is Crucial

Your spouse must also educate him or herself! He or she cannot help and support you without knowledge of the disease/condition. Encourage your spouse to attend a session with your specialist to learn firsthand how to help you. In my book, “Rheumatoid Arthritis: A Living Nightmare,” I wrote about a husband who tended to discount his wife’s pain. I quote:

Family support is crucial for one with an autoimmune disease.
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“A husband accompanied his wife to her rheumatology visit to ask the doctor questions.  He asked the doctor, “Just how much pain is she in? I have some pains – possibly arthritis – from old football injuries. Can hers be worse than that?”

The older physician looked at him and smiled.  ‘How would it feel if I took a hammer and beat your fingers with it?  Or what if I jumped on your bare feet while wearing combat boots?’ “

Unless someone gets through to them, spouses don’t always understand just how debilitating an autoimmune disease can be.

Don’t expect your spouse to read your mind. Make sure he/she and the rest of your family is as educated as possible about your condition and prognosis. If you live with someone who is so self-centered that he/she doesn’t want to see your issues, that’s a different problem and requires a professional to handle.

Many just don’t understand and automatically assume you are making a big deal out of something everyone deals with at some point. Be specific. Tell them what you can and cannot do. You will quickly learn who truly cares.

Find an Emotional Outlet

Determine what activities engage passionate feelings in you. Perhaps it’s crafts, sewing, reading. Consider joining a group related to your interest. If there are certain times of the day you feel best, maybe you can volunteer for an hour or two for a charity of your choice.

My passion was animals and working in animal welfare helped me. It wasn’t that difficult to foster dogs or cats if I had the facilities to handle them. And when I couldn’t do that, I could write about them. Doing something you truly enjoy will help take your mind off your troubles and may help someone else.

Stay Physically Active

Exercise is important for those with autoimmune diseases.
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Muscles atrophy if they aren’t used. So even if you feel some pain, try to stretch and do light exercises to keep joints, muscles, ligaments and tendons loose and working. Exercise in some form every day to feel better! Where I live there are 2 workout centers, and I use those to ride a stationary bike 4-5 days a week. Even twenty minutes on that bike makes me feel better. Yes, it hurts sometimes, but I do it.

Avoid Stress!

I can’t emphasize this one enough! But it’s also the most difficult to accomplish. Take stock of your life and write down everything that stresses you. Then remove what you can from your life. Hire someone to help with chores if you can afford to do so. Put your children to work. Give them reasonable tasks according to their ages. My 6 children began washing, folding and putting away their own laundry at the age of 12. That’s a life skill they should learn anyway.

Choose a Healthy Diet

A healthy diet helps with autoimmune disease symptoms.
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I readily admit my eating habits weren’t the best when I was young. I was addicted to Coca-Colas – for every meal. I ate junk food at will. Because my metabolism digested it all quickly, the extra calories didn’t hurt me as they would now. After my diagnosis, I learned that some foods cause bad reactions in patients with my autoimmune disease. Dairy and I were no longer friends. Tomatoes became a problem.

With your diagnosis, you will learn which foods, if any, bother you by trial and error. Focus on eating a balanced diet to help with your symptoms.

The Role of Your Physician

Your doctor plays an important role in your overall health. Hopefully, you will follow his or her medical advice and at least listen to his other advice about your life. If you don’t develop a good rapport with him or her, find another doctor. Sometimes, personalities don’t mesh. Sometimes, a doctor doesn’t spend enough time with a patient or isn’t open to opinions other than his own. Just make sure you do your part as a patient and move on if the relationship doesn’t work for you.

Make a Plan for Your Life

When a doctor first diagnoses you with a life-changing disease or condition, you may become overwhelmed by emotion or fear. Before panic sets in, sit yourself down and write up a plan for your future. Just because one doctor tells you that said future is bleak, doesn’t mean it is true. Educate yourself, find the support and help that you need to conduct your life and raise your family, and work out how you will live and thrive, regardless of your autoimmune disease.

After that depressing prognosis I received many years ago from a rheumatologist, I am happy to say that a subsequent physician prescribed a biologic drug that changed my life. A wheel chair will NOT become my mode of transportation as long as I continue to advocate for myself and take steps to live my life and not just exist. Hopefully, you can do the same if an autoimmune disease presents itself in your life.

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