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Pam Rainey: Autoimmune diseases mean looking fine, but feeling pain

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Pam Rainey

I wish I could go back and apologize to my mother. She suffered from two autoimmune diseases, fibromyalgia and polymyalgia. Polymyalgia is the elder form of fibromyalgia, as it has been explained to me.

I now have been diagnosed with both diseases. I was diagnosed with fibromyalgia at age 40 and polymyalgia at age 67.

My mother was a beautiful lady. She didn’t look like anything was wrong with her. I would call her on a Monday and ask her to go to lunch on Thursday, and she would often say: “Honey, I don’t know how I’m going to feel on Thursday.”

I didn’t understand autoimmune diseases then, and I probably was not kind to her.

For a lot of people, autoimmune diseases are mysterious. And when I started doing research on them recently, I realized I will never know enough about them.

Autoimmune disease run in our family. My sister suffers from rheumatoid arthritis and my niece suffers from Crohn’s Disease.

Like my mother, many who suffer from autoimmune diseases don’t look sick. They don’t walk with a cane, need a wheelchair or have some other sign that shows their suffering.

Until recently, the medical community didn’t acknowledge many autoimmune conditions. Thank goodness they do now.

These diseases come in many forms but have one similarity: They often can’t be detected on sight, especially by those of us who aren’t doctors. But if you are very close to a person with an autoimmune disease, you can look into their eyes sometimes and see their day is not going so well.

Fibromyalgia affects the muscles. Sometimes it feels as though your body has been through a meat grinder. Same for polymyalgia.

Rheumatoid arthritis affects the joints. Crohn’s disease affects the digestive system. There are other autoimmune diseases I haven’t mentioned, and many I am not aware of that affect other parts of the body and they make the patient feel terrible.

My sister used a wheelchair for a while until she turned 65. Then Medicare began covering an expensive infusion she gets every six weeks. She now leads an active life. Sometimes, she pulls back if she’s not sure how she’ll feel months from now. She sometimes declines invitations she wants to accept because she really doesn’t know if she’ll feel up to socializing.

I do the same. That is the frustrating part of the disease.

An article on the blog Pinsandprocrastination.com — “15 things not to say to someone with a chronic or invisible illness” — offers tips to keep from insulting someone who is already hurting.

Don’t say:

1. “You don’t look sick.”  People with autoimmune diseases go to great lengths not to look sick.

2. “You’re too young to be sick.” Autoimmune disease strikes young and old.

3. “Everyone gets tired.” That may be true, but the difference is the level of tiredness we feel. Naps don’t really help.

4. “You are just having a bad day.”

5. “It must be nice not having to go to work (or school, or another event).”

6. “You need to get more exercise.”  

7. “I wish I had time to take a nap.”

8. “Think positive.” Positive thinking is very important to a person who is working through an autoimmune disease and they probably are working on it.

9. “Just push through it.”

10. “It will get better. Just be patient.”  I’ve found it gets worse with age.

11. “Have you tried the paleo diet, acupuncture, super magic moon crystals, this weird new therapy I’ve heard about?” If you’re not a doctor, refrain from giving medical advice.

12. “You are stressed.”

13. “It’s all in your head.”

14. “You need to get out more.” If you only knew how we used to get out. I think this one is the most hurtful.

15. “You take too many medications.”

I have another tip. Don’t insist the person living with autoimmune disease “looks so good.” The person has probably heard it before, and believe me, it doesn’t feel like a compliment.

For those who suffer from autoimmune disease, listen to your doctor and follow orders. Forget what others think about your chronic pain. Like the Frozen song says “Let it go.”

If you’re living with a chronic illness, take it easy on yourself. You are doing the very best you can with what you’ve been given.

PAM RAINEY is a longtime Denton resident and a real estate agent who has helped many seniors make decisions about living arrangements. You can reach her with suggestions at pam@realestatedenton.biz or 940-293-3117.

FEATURED IMAGE: People living with painful autoimmune diseases don't have simple solutions, like aspirin or positive thinking. DMN file photo.