The part of life with fibromyalgia that I haven’t talked about.

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

Many people know that I have fibromyalgia. What they don’t know is the reality of what I deal with. They see a young, positive and silly 25-year-old woman abroad, but they don’t realize how much pain I am suffering or how much my anxiety affects me. I don’t think people really understand the intensity of my conditions. I admit that part of this is my fault, showing only the good parts of my life on social media, but showing the not-so-good parts can sometimes result in a search for attention. I don’t want attention, I want my conditions to stop being stigmatized. I don’t want compassion, I want people to understand these diseases.

Here is the reality of someone with fibromyalgia:

1. consumer

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When you tell someone that you have pain, they don’t take it very seriously. Usually, they think you have a typical headache or backache. They do not realize that their whole body is experiencing pain, stabbing pain, needles, numbness or, often, a burning sensation. Nor does he realize that the clothes he is wearing or the cloth chair he sits on can also cause him pain. People with fibromyalgia are sensitive to certain tissues 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 bad 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 hurt. Bringing a basket from the grocery store can squeeze my hands and my elbows, sometimes it is impossible to open the jars, housework can take everything away and the list could go on.

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 you will feel that I have not slept at all. For me, chronic fatigue is one of the most difficult symptoms. There have been days when I am nervous about driving long distances because the sun causes really severe fatigue. I work a desk job, but at noon I feel like I’ve been doing heavy work, and all I want to do is go home and sit on the couch. And good luck trying to schedule something with me after work. I will be too tired to do something. If you can make me go out with you on weekdays, it is 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 in the middle of the sentence because he forgot what he was saying or stopped a conversation altogether because he can’t think of the right words to use.

This is the most shameful symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me for this. Sometimes, I can’t remember how to spell a word when I’m writing. I check my text messages, emails and social media posts several times before pressing the “send” or “send” button. The shame of brain fog causes me a lot of anxiety. I just want people to know that they can’t control the way my brain works sometimes.

Here are some other common things that fibro warriors fight with.

1. Mental illnesses that include, among others, depression and anxiety.

2. Temperature sensitive. Summers, and especially winters are often unbearable.

3. Irritable bowel syndrome (IBS).

4. Hot and cold night sweats / hot 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 struggle with symptoms other than others. All symptoms are different for each person, so it is difficult to explain to doctors what their symptoms are. Patients with chronic diseases seem to know their illness more than professionals, and that can be difficult when it comes to medications and treatments. We are all in this together, and we need the support and understanding of 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 (soft) hug and ask what you can do to help him. Just being there to listen could mean the world!

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