For the first time ever, following the public announcement from Boris Johnson (U.K. Prime Minister) and Sir Patrick Vallance (Government Chief Scientific Adviser) yesterday; I have a better understanding of the significant impact Corona Virus could have on people at risk and the economy. The serious impact that is now being considered is for the high risk and vulnerable people who could potentially be adversely impacted, as a result of coming across someone who has the virus.
From the beginning my main concern has been the adverse impact corona virus could potentially have on me as someone with living chronic illnesses, such as Fibromyalgia with other additional underlying medical conditions. Also, for people who are considered to be at high risk and in need of urgent medical care.
I have been astounded especially by people who consider themselves to be well and healthy, have been over buying and stock piling food, toilet tissues and hand sanitizers without serious consideration on the potential impact of the most vulnerable and high risk groups in their community. Mind you, I am not including myself yet, in the most vulnerable group (even though my condition is disabling and debilitating).
What has been highly concerning for me from the beginning of the new of Corona Virus developments has been the lack of information on the potential impact for people living with Chronic Illnesses.
Understandably, the highest priority and focus for the U.K. National Health Service and Government is for the high risk groups; the elderly and those in hospital.
My other concern is that at some point we "the vulnerable group," may be left behind and not considered seriously as a group category to include in special measures when the time comes. This has been the normal approach and attitude that most people in the Fibromyalgia Community experience when it comes to serious issues impacting on our health and financial support from government. Most people, including myself continue to experience on going and much harder times in trying to prove how sick we are. At a local level (GP's Services) and national level (Government). Reason being is "we look well," this is the challenge of living with an invisible chronic illness.
Here are my thoughts:
1. As Fibromyalgia and Chronic FatigueSyndrome is often not taken seriously as a debilitating chronic illness already by most Medical Professionals, Government Officials and Local Communities Officials, how we will fair during the most challenging times? This excludes Specialist Health and Government professionals who are well informed about Fibromyalgia (which is a small number). It remains to be one of those invisible conditions that is excluded from the category of being a serious chronic illness which adversely affects millions of people.
The following quote from Fibromalya Action U.K demonstrates some of the challenges, people with chronic illnesses such as Fibromyalgia experience;
"FMA UK have worked to improve training content that people working at the DWP use when considering people that are diagnosed with fibromyalgia. Therefore, we are shocked, dismayed and angry that there appears to be a culture of intolerance towards people with disabilities and specifically fibromyalgia. It certainly explains some of the stories that we receive on our helplines about people being mistreated at assessments. To hear from Charlotte within the DWP talking about the "cynical attitude" and them "not being empathetic towards certain illnesses." However, it was really shocking to hear comments like "another claim of fibromyarse." This is not acceptable on any level and is clear discrimination."
2. Most people living with Fibromyalgia have compromised immune systems, due to other conditions they either had prior to, or after they were diagnosed with Fibromyalgia. The condition alone of Fibromyalgia is debilitating on its own and is made worsened by other diseases and viruses such as the Flu Virus. I also have an autoimmune condition known as Hypothyroidism and previously suffered from adverse impacts of Seasonal Flu's such as Bronchitis (stretching over a three year period).
3. Fibromyalgia symptoms mimic flu like symptoms. Some of us still do not know how we will be able to distinguish between Fibromyalgia versus Corona Virus Symptoms. Including when would be the most appropriate time to contact Health Services. Some of us may also be at risk of delaying contacting Health Professionals for various reason, thereby worsening our symptoms.
4. People like me are more vulnerable to flu and pneumonia symptoms and on top of that we have the added pressure of potentially having to deal with Corona Virus. Most of us have been able to rest assured with having the option to be protected against preexisting seasonal flu viruses. Flu alone for me triggers a flare up, or chronic fatigue symptoms, plus other ailments which impede on cognitive and physical functioning. My symptoms including sensory and nerves are more heightened and feel worse than they would normally in a healthier person.
A significant flare up at its worst means experiencing more severe musculoskeletal wide spread pain all over the body, which impacts on muscles, bones, ligaments, tendons and nerves. The adverse impact potentially means becoming immobile for days, weeks or months. Then there are the cognition issues, such as Chronic Fatigue, Insomnia, Sensory Overload and Cognitive Impairment. Which are made worse also by external environment factors and cold and flu symptoms.
5. There is still the unknown factors of what could potentially happen to a person with a chronic illness who has an underlying chronic illness with multiple ailments.
Lastly, there is still the unknown factor whether people with chronic illnesses such as Fibromyalgia will be given serious consideration in the category of, "the most vulnerable?" Or whether there continue to be a disregard of people living with this debilitating and incurable chronic illness, as "a not serious enough condition."
There is the potential risk that this group of people could be overlooked and excluded from being given serious consideration, as one of the most vulnerable, or potentially at-risk groups. As explained above, due to historical behavior and lack of awareness of Fibromyalgia and Chronic Fatigue, as well as other similar chronic illnesses.
When the time comes, when the U.K. Government decides vulnerable groups must self-isolate, who will be our voice in government? Who will represent and speak on our behalf in Parliament, or other Government/Media Platforms?
Additional Lasting Thoughts:
For the healthier people who are still wondering what the panic is all about. Our panic is us (people like me or high-risk groups) coming into close contact with you. Should you be the carrier of the virus "universal gods forbid." You are most likely to experience milder symptoms and recover after a week or two. While those of us with comprised immune symtpoms and additoanal chronic illnesses conditions are most likely to experience severe symptoms which could last for months.
Even if the illnesses may not lead to death (we don't know yet), there is the change that most of us, could potentially become seriously debilitated and bedridden for days, weeks, months. This is the same impact, well for me, that I experience for example when infected with cold/flu like symptoms, or prolonged activity/travel. Point being, is that it doesn't take much for people living with Fibromyalgia to become more debilitated.
To end, next time you decide to go shopping. If you intend on going overboard in medical supplies and stock piling on food (due to fear) please consider someone who might medically and urgently need those items. Thank you in advance:)
YOUR FEEDBACK AND VIEW MATTERS!
I value your feedback, especially if you are living with a Chronic Illness and Invisible Illness like Fibromyalgia and Chronic Fatigue Syndrome with other underlying conditions. What has been your experience so far? Do you have any concerns or worries?
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Living with Fibromyalgia Facebook Page
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Diclaimer:
I write as I think and review my writing (if needed) after publishing my blog posts. My intention is not to be grammatly or politically correct. Otherwise knowing me, I'll would end up spending ridiculous hours reviewing and re-editing my written work before pressing the publish button. Consequently, I may end up not publishing anything due to fear what other people think, or end up diluting my initial thoughts in order to please others.
If you notice any errors, spelling mistakes or incorrect grammer, please do keep this in mind. Plus, I suffer from cognitive impairement:) I hope by reading my blog post, you undrestand the substance of what I am trying to say, that's what matters the most for me.
