Miss Understood: Fighting to be Heard

Miss Understood: Fighting to be Heard

As a person who suffers from autoimmune diseases, I sometimes feel as if people put my conditions on the back burner and make them seem less important.

You often hear about cancer walks or runs for various conditions, but when I try to raise awareness about arthritis or lupus people are less likely to respond. They think that unless it’s called “cancer” it must not be severe.

Arlene Grau

Arlene Grau

The problem is that having an autoimmune disease is a life sentence that can’t always be managed. The diseases not only cause sometimes irreparable damage, but the physical pain and agony that comes with them makes life difficult.

I feel as though I have to constantly prove myself and show people that awareness about the disease is necessary. Just because it’s misunderstood or there is no big uproar about finding a cure doesn’t make it any less important.

I believe that all ailments are important and that people should care even if it doesn’t currently affect them. You never know if someone in your family may one day be diagnosed with something. If they were, you would want to know that everything is being done to find a cure or treatment that will give them some form of relief.

Aside from that, almost every disease or form of cancer shares a common symptom: Pain.

And at the end of the day, we’re all fighting for a common cause: Relief.

If only one person suffers from a condition, that doesn’t make their diagnosis any less important than mine. We’re both dealing with something that affects our way of living and may possibly shorten our life span. So if I’m willing to walk or march to raise money for my cause, I should also be willing to do the same for theirs.

Now, that’s coming from a person who is in poor health. What’s stopping you from joining the cause?

I personally believe in the saying “out of sight, out of mind.” If we’re not directly affected by something, usually we don’t care to be bothered by it. People have no problem sending well wishes or saying something encouraging, but when they’re asked for a little bit more they come up with every excuse in the book.

I remember making pins for Lupus Awareness Month and handing them out to everyone at work last year. I asked them to wear it all month long, but after a day or two I hardly saw anyone with the ribbon. I was so hurt because it wasn’t like I sold them — I gave them away. It wasn’t like it was a hassle to put it on or it looked ridiculous, it was a small ribbon on a safety pin.

People are so caught up in themselves that they’re unwilling to give others any of their time or effort.

I know that not everyone thinks or feels the way I do, but shouldn’t we all want a disease free world so that everyone has the opportunity to live a long and prosperous life?

I spend half my time at doctors’ appointments or the hospital, and another ten percent recovering from my treatments. That’s time away from my husband and kids. I feel robbed and I’m going to continue to do everything in my power to spread the word about the need to find a cure for what I have as well as show my support for others.

Maybe this year my forum will be bigger and more people will join me in my cause.

Arlene and girlscropped1Arlene Grau lives in Lakewood, California with her family. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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I wonder how long it will take for anyone to benefit from this or if anyone will.

National Institutes of Health Research Opportunities-Research on Chronic Overlapping Pain Conditions (R01) –

trudy myers

I feel like my doctor has no clue what pain I am in. I have neck and back issues and fibromyalgia-I also have peripheral vascular disease and diabetic neuropathy. I am in constant pain in varying degrees and trying to get him to understand that I am not on enough medication-is like talking to someone who doesn’t speak English. I feel very disgusted with my health care providers

Julia Hicks Poole

Arlene, thanks for sharing your story. I have stated some of the exact feelings. We will always be in pain. Invisible diseases without any cures and most hard to diagnose. When you even mention Fibromyalgia, most people flinch and don’t even want to hear it. Those are complaining people!! So misunderstood. I have several chronic conditions and I have been suffering for 25+ years. We don’t want sympathy, just to be understood and a tad of compassion. Thanks again and hugs to you!


I learned many, many yrs ago that empathy only goes as far as the individual allows it to go. Like you said, if you or a loved one isn’t directly affected by something, you have no clue. There is no way for someone to understand what it is like to not be able to take a shower because of chronic severe pain if it has never affected them in one way or another. If the only pain that person has had isn’t severe enough and chronic enough to stop them from doing basic things like showering for days on end, they just don’t know. And frankly, they don’t want to know. This is just one example, but people don’t realize and unfortunately, they don’t want to.