By: Wendy Henderson
May 12 is Fibromyalgia Awareness Day, which means all around the world, patients, caregivers and the organizations who support them will be trying to bring attention to this misunderstood disease.
If you’re wondering what can you do to help, newlifeoutlook has quite a few ideas.
There are many ways that you can help to raise the profile of fibromyalgia including:
Getting on social media to share facts, stats, figures and life stories about fibromyalgia.
Getting involved in a local fibromyalgia awareness event.
Hosting your own fibromyalgia awareness event to raise funds for research.
Donating to a fibromyalgia charity or non-profit organization.
Hosting a Facebook page for locals with fibromyalgia.
Joining or hosting a local support group.
Contacting your senator or congressman to talk about extra funding for fibromyalgia research and treatment.
Becoming an advocate for fibromyalgia and speaking out to the medical world and the media.
Printing out support posters and putting them up at your place of work/school/college
Wearing a fibromyalgia purple ribbon and talking to people about the disease when they ask why you’re wearing it.
Creating your own YouTube video to explain what it’s like to live with fibromyalgia.
Selling fibromyalgia wristbands to friends, neighbors, and colleagues.
10 Things I Wish People Knew About Living With Fibromyalgia
By sharing this, I hope to raise awareness about fibromyalgia and to help others realize they are not alone.
1. It is invisible. I may “look well” to you, but I am not.
2. Fatigue is an all-encompassing feeling of extreme exhaustion and weakness that sleep cannot alleviate. It is not the same as being tired. Fibromyalgia also causes sleep and cognitive issues, which makes it hard to function and think clearly.
3. I am always in pain. There is no break or escape. It hurts everywhere. Even with all the positive thinking, medications, treatments and healthy lifestyle, it is always there. Some days are better than others. It’s not something you can get used to and it doesn’t get easier with time. Pain is pain and it is often excruciating.
4. It is debilitating and unpredictable. Every day is different. If I can do an activity today, chances are I will pay for it later – and it doesn’t mean I will be able to do it again tomorrow.
5. It’s difficult to explain, understand and treat. For those who do not live with chronic illnesses, trying to imagine a level of pain and fatigue they have never experienced is impossible. Not to mention the myriad other symptoms. One of the greatest challenges of living with invisible chronic illnesses is the lack of awareness and understanding. I am often judged. It’s hard enough battling my own body every day, but then to have someone undermine or invalidate what I am experiencing – whether it be a doctor, friend or stranger – it can be devastating and adds to the struggling. I don’t want sympathy or pity but rather respect, empathy and some understanding.
6. I fake being well when I can. For my own self-preservation, not to upset or burden others and because the reactions, advice or comments I receive are often not helpful and make me feel worse. I am also trying my best to live a normal life despite being ill.
7. There are innumerable symptoms which this condition causes, affecting all systems of the body. Those who have this condition, myself included, often have several other associated conditions such as chronic fatigue syndrome/ME, myofascial pain syndrome, POTS, IBS, RLS, migraines, etc. It is not a one-size-fits-all condition. It can appear differently in each individual.
8. I have great willpower and I am a fighter. However, it is a daily balancing act – there is a fine line between pushing through the symptoms and overdoing it – resulting in relapses that could last weeks and months. The slightest thing like stress can trigger a flare, which is an exacerbation of all my symptoms. You don’t see me bedridden at my worst, not even the doctors do.
9. It’s a constant grieving process which is often hard to accept. There are so many things I used to be able to do that I can no longer do, no matter how much I try. Every basic activity takes a great deal of effort.
10. It can cause depression, frustration and anxiety. It can be physically and emotionally draining. I’m often pushed beyond my breaking point. Even with all my healthy coping mechanisms and mindfulness, I still struggle to manage. Anyone in this situation would.
Each day is an opportunity to be the best person I can be and improve my quality of life as much as possible. I focus on the positive, what I can do and all I am grateful for. I am not my illnesses – and while they affect every aspect of my life, I refuse to be defined by them.