By Tiana They,
I’m a pretty open person when it comes to physical and mental illness, but I can also be very reserved, especially about my chronic pain and fatigue. It’s not because I do not want to share about what is going on with me, but because I do not want people to think I’m a “crybaby” or “attention seeker. “I’m neither of those things. In fact, I’m quite the opposite.
Many people know that I have fibromyalgia. What they do not know is the reality of what I am dealing. They see a positive effect, silly young 25 year old woman on the outside, but they do not realize how much pain I am, or how my anxiety affects me. I do not think people really understand the intensity of my terms. I understand that part is my fault, to show the good parts of my life on social media, but showing the worst parts can sometimes come off as seeking. I do not want attention, I want my conditions cease to be stigmatized. I do not want pity, I want people to understand these diseases.
Here is the reality of someone with fibromyalgia:
When you tell someone that you are in pain, they do not really take very seriously. They generally think that you have a typical headache or back pain. They do not realize that your body experiences pain, throbbing pain, needles, numbness, or often, sometimes a burning sensation. The also do not realize that the clothes you wear, or the chair sitting on your fabric could cause you pain too. People with fibromyalgia have some sensitive fabrics and materials. Some of us (myself included) feel the pain in their organs. I had pain in the ovary for years and did not know what it was until I was diagnosed with fibromyalgia.
Our pain is often unbearable, and can cause difficulties in everyday situations. When I go to the bad breakouts, sometimes I’m late for work. It seems that no matter how I wake up early, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are locked, and my hands hurt. Carrying a basket of groceries can cause hands and elbows to tense, opening jars is sometimes impossible, household chores can take everything from you, and the list could continue.
Speaking of being late for work, fatigue is another reason why it is so difficult to get out of bed I might have had the best sleep of my life, but it will feel like I did not sleep a wink. For me, the chronic fatigue is one of the most difficult symptoms. There were days I’m nervous to drive long distances because the sun causes really bad fatigue. I work a desk job, but at noon, I feel like I’ve done the hard work, and all I want to do is go home and sit on the couch. And good luck trying to plan anything with me after work. I’ll be too tired to do anything. If you are able to take me out with you during the week,
3. brain fog
This is the symptom that I will address. brain fog is a bitch to say the least. completely forgetting about a conversation you had yesterday, having to pause midsentence because you forgot what you said, or stop a conversation altogether because you can not think of the right words use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people judge me because of it. I find sometimes I do not even know how to spell a word when I hit. I read my text messages, emails and social media messages several times before pressing the button “send” or “submit”. Spoiled for brain fog is so much anxiety.
Here are some other common fibro warriors fight with:
1. Mental illness, including but not limited to depression and anxiety.
2. Temperature sensitive. Summers and winters are especially often unbearable.
3. irritable bowel syndrome (IBS).
4. Night sweats / hot flashes and cold.
6. painful and irregular menstrual cycles.
7. balance problems.
8. Tinnitus (ringing in the ears).
9. syndrome restless legs.
10. rashes and skin disorders.
It is very common for people with fibromyalgia will fight with different symptoms than others. All the symptoms are different for everyone, so it is difficult to explain to doctors what your symptoms. patients with chronic diseases seem to understand their illness as professionals, and that can be difficult in terms of drugs and treatments. We are all together, and we need the support and understanding of people and their loved ones in our lives.
I hope this sheds some light on this terrible disease. If you know someone living with fibromyalgia, will give them a (fresh) hug and ask what you can do to help. Just be there to listen could mean the world!