The part of life with fibromyalgia that I have not told you

I am a fairly open person when it comes to physical and mental illnesses, but I can also be very reserved, especially about my chronic pain and fatigue. It is not because I do not want to share about what is happening with me, but because I do not want people to think that I am a “crybaby” or an “attention seeker”. I am not one of those things. In fact, I’m the opposite.

Many people know that I have fibromyalgia. What they do not know is the reality of what I deal with. They see a positive, silly, young woman of 25 years abroad, but they do not realize how much pain I feel or how badly my anxiety is affecting me. I do not think that people really understand the intensity of my conditions. I will admit that part of this is my fault, for showing only the good parts of my life in social networks, but showing the not so good parts can sometimes seem like a search for attention. I do not want attention, I want my conditions to stop being stigmatized. I do not want pity, I want people to understand these diseases.

Here is the reality of someone with fibromyalgia:

1. Pain

When you tell someone that you are suffering, they do not really take it very seriously. Usually, they think you have a typical headache or back pain. They do not realize that their whole body experiences pain, stabbing, needles, numbness or, often, a burning sensation. They also do not realize that the clothes they are wearing or the cloth chair they are sitting on could also be causing pain. People with fibromyalgia are sensitive to certain fabrics and materials. Some of us (including myself) feel pain in their organs. I have had ovarian pain for years, and I 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’m going through serious outbreaks, sometimes I’m late for work. It seems that no matter how early I get up, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are blocked and my hands are sore. Carrying a basket of groceries can make my hands and elbows tense, opening jars sometimes is impossible, household chores can take everything away and the list could continue.

2. Fatigue

Speaking of being late for work, fatigue is another reason why it is so difficult to get out of bed. I could have had the best dream of my life, but it will feel as if I did not sleep an eye. For me, chronic fatigue is one of the most difficult symptoms. There have been days when I’m nervous to drive long distances because the sun causes really bad fatigue. I work at a desk job, but at noon I feel like I’ve been working hard, and all I want to do is go home and sit on the couch. And good luck trying to schedule anything with me after work. I will be too exhausted to do anything. If you can make it go out with you on weekdays, it’s probably because no matter how tired I am, I really need your company.

3. Brain fog

This is the last symptom I will touch. Brain fog is a bitch to say the least. Forgetting completely a conversation he had yesterday, having to pause a half sentence because he forgot what he was saying or stopping a conversation completely because he can not think of the right words to use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me for this. Sometimes, I can not remember how a word is spelled when I write. I checked my text messages, emails and social media posts several times before pressing the “send” or “send” button. The shame of brain fog causes me so much anxiety.

Here are some other common things with which to profit warrior warriors:

1. Mental illness that includes, but is not limited to, depression and anxiety.

2. Sensitive to temperature. Summers, and especially winters are often unbearable.

3. Irritable bowel syndrome (IBS).

4. Night sweats / hot and cold flashes.

5. Insomnia.

6. Painful and irregular menstrual cycles.

7. Problems with balance.

8. Tinnitus (ringing in the ears).

9. Restless legs syndrome.

10. Eruptions and skin disorders.

It is very common for people with fibromyalgia to have different symptoms than others. All symptoms are different for everyone, so it is difficult to explain to doctors what their symptoms are. Patients with chronic diseases seem to know their disease more than professionals, and that can be difficult when it comes to medications and treatments. We are all in this together, and we need support and understanding from the people and loved ones in our lives.

I hope this sheds some light on this terrible disease. If you know someone who lives with fibromyalgia, give him a hug (gentile) and ask him what you can do to help him. Just being there to listen could mean the world!

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