Monday, July 7, 2014

Top Ten Things Not to Say....

Top Ten Things Not to Say

to Someone with an Autoimmune Disease

I compiled this top ten list with the help of others who suffer with various autoimmune diseases. My goal is to educate others on life with an autoimmune disease. Most people who make the comments listed below, do so out of genuine concern.

Autoimmune diseases are not easily understood, even by those of us who suffer with them. As a result, it's very difficult for those who do not have one of these diseases to understand what we deal with. 

I hope after reading this top ten, you'll have a better understanding of the disease and how it affects us.

10. Did you hurt yourself?

Many times those who ask this question may not realize the person has an autoimmune disease, but it is discouraging to hear that question from friends and family members who know you have a disease that affects the joints. It's hard enough to use a cane, wheelchair, or an ECV without hearing questions like this one.

The person asking the question is probably genuinely concerned, but since Rheumatoid Arthritis, Lupus, Psoriatic Arthritis, and many other autoimmune diseases tend to be invisible, those who suffer from them often feel judged by others. 

It is difficult to explain to someone that there is no injury, but the overwhelming fatigue and joint pain have made the assistive device necessary.

9. Have you tried Aleve, Tylenol, or any other over the counter medication?

We have. They aren't strong enough to touch our symptoms. Most of us are on prescription-strength anti-inflammatory medications along with many other drugs to try to control our diseases.

8. Have you thought about trying the Paleo, Atkins, gluten-free, etc - diet? 

Many times we have tried these diets at the urging of our families and friends. We all have someone who cares about us and tells us to try this or that diet, and we'll be cured because their friend was. While I wish the cure was something as simple as changing my diet, the truth is, it doesn't work. 

While a healthy diet and lifestyle will promote optimum health with these diseases, it won't cure them. Many people with autoimmune diseases do find some measure of relief from different diets, and I know of some who, with diet modification, can go off of their medications, but they are in the minority.

7. If you'll try this supplement, etc, it will cure your autoimmune disease.

The truth is, many of us have tried several of those "cures" to no avail. Unfortunately, there is no cure for the autoimmune diseases. When our immune system goes into overdrive and decides to attack us, there is nothing that will cure it - only medications that will control it. 

6.  If you'll just work-out harder, it will cure your arthritis.

How I wish this statement was true. Unfortunately, it won't. It may make the muscles stronger and better support the joints, if we don't work out to the point we damage or stress the joint. However, during a flare, the joints are inflamed and painful. Working out at this point will put too much stress on the joint.

5. Why are you in a wheelchair or scooter? You can walk.

I've read comments similar to this on many websites talking about theme parks. Some of the park goers become angry when someone who can walk, rents an ECV. While we can walk, and do want to walk part of the time, there is no way someone with an advanced autoimmune disease could walk the entire park. Fatigue and pain coupled with an unsteady balance and frequent falls makes walking the theme park dangerous for many with autoimmune diseases. 

Often people with autoimmune diseases struggle to walk the parks rather than have people make comments. This is detrimental to the person with the autoimmune disease and those around him/her. If that person falls, they may trip someone else injuring themselves and a bystander.

I honestly believe many people who make rude comments about those who use scooters in the parks, do so because they don't understand how devastating an autoimmune disease is, even though the person does not appear ill. 

Many who suffer from autoimmune diseases also deal with weight issues. Part of the problem is decreased activity. prednisone, a drug frequently used with autoimmune diseases, causes weight gain. So the person may look like a healthy, but overweight person who is using a scooter, but in reality, they may have a severe illness.
Out for Blood

4. Do you still have that? I thought you'd be over it by now.

Unfortunately, we've all heard this one. Yes, we still have the disease, and no we're not going to get over it. It's something we will deal with for the rest of our lives. 

Because the diseases tend to wax and wane over time, the sufferer may have more symptoms at one time, then have a period where symptoms are minimal. To the casual observer, it appears the person "gets better". When the person with the autoimmune disease has a bad flare, it's understandable why others are surprised that they continue to have this disease. 

3. You know, I have a little arthritis myself.

The arthritis associated with autoimmune diseases doesn't just affect our joints. It's a systemic diseases that can affect blood, organs, etc. It causes severe fatigue. A fatigue that is difficult for most to understand. 

The person with an autoimmune disease often wakes in the morning more tired than before he/she went to bed. The fatigue is made worse by the body-wide inflammation. 

When the person with autoimmune disease says they are too tired to do something, he/she means the fatigue is overwhelming, and it's impossible to complete the task. 

 2. Why are you parking in a handicapped spot?

If we waste all of our energy walking from the parking lot to the store, even if we use the motorized cart, we may not have enough energy to finish the shopping trip. Most of us don't use the reserved parking on our good days, but the bad days, we wouldn't make it without it.

While the person with an autoimmune disease doesn't look ill, they are. The fatigue and joint pain overwhelm at times making a handicapped spot the only option.

1. But you don't look sick.

Well-meaning people often say this to those who suffer from autoimmune diseases. While it's true, we don't look sick, we are still ill. It's an illness that will affect us for the rest of our lives and we are just trying to learn to deal with it the best way we know how. 

The majority of people who make this comment do so because they have a hard time reconciling the fact that a healthy-appearing person can be so illMost aren't being hateful or mean when they say this, but are trying to understand.

Hopefully after reading this list, you will have a better understand of what the person with an invisible, autoimmune disease must deal with.


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