I saw the above picture floating around facebook this week and realized how true these statements are.
Five of the hardest “pills” to swallow in regards to chronic illnesses:
1. Giving up your career. Most people who get diagnosed with chronic conditions often have to face the dilemma of continuing to work or giving up their career or job they are employed in. No matter what job path you follow, the road can become difficult when you factor in a chronic condition like fibromyalgia. Fibromyalgia is very unpredictable and varies day to day. While battling the intense pain, extreme fatigue and any other symptoms that arise, punctuality at a job dwindles. Did you know the pain chronic pain sufferers feel would send people without pain conditions to the hospital seeking relief?!? If I went to the hospital every time I had pain, I would live there because the pain never really goes away. Most people will continue to work for as long as they can to avoid financial burdens. Let’s face it, cost of living is getting expensive and continues to rise every day. Others may not have the opportunity to even consider limiting work hours or ceasing work completely – so they carry on ignoring the pain and other symptoms the best they can. Everyone’s situation will be different, and each and every one of us will have to make the best choice for our circumstances. There are a lot of aspects to consider before making your choice. Writing a pro and con list may help you make your decision. In a study it showed that working can improve one’s overall health and well-being, along with decreased fatigue and pain levels. I’m not so sure I agree with this study, as I found the complete opposite. Maybe for some people fibromyalgia is milder and not so disabling, but for myself I felt I could not continue to work due to the unpredictability and forever changing symptoms that rear their ugly heads. Working as an educational assistant in schools with children with developmental challenges became too overwhelming and demanding that I remained off of work.
2. There is no cure for your illness. Before I got my solid diagnosis, I yearned to know what was wrong with me. All the unexplained symptoms were very mentally and physically draining. When I finally got told it was fibromyalgia, I was happy to have a diagnosis, but finding out there is no cure is a slap in the face. It usually takes a long time period before one is diagnosed with fibromyalgia, leaving that person trying to manage the symptoms until then. We learn how quickly fibromyalgia can alter life – then to be told there is no cure is difficult to absorb. You wonder how you will survive the rest of your life in pain and start to wonder if you have the strength to do so- somehow you manage to find the courage to get through each day. It can be overwhelming to think about trying to manage a condition the rest of your life that is forever changing. Day by day! That is my best advice. I find looking too far ahead is overwhelming and the anxiety begins to set in. I learn to wake up each morning and gage what my day may look like. If I wake up feeling not well and in pain my day is low key.
3. Losing friendships/relationships
Sadly, chronic pain conditions can put a strain on one’s friendships and relationships. When one is diagnosed with a chronic condition their capabilities alter daily. Friends I once had connections with, I know longer do because of the limitations fibromyalgia creates. I find myself scared to make plans, because I never know how I will feel. Family and friends may not understand why you avoid going out with them – I try to be honest and make sure they know it is for this reason and I am not avoiding them personally. Your once shared hobbies/activities may soon not be able to be your hobbies anymore due to your condition. For example, you may have joined a sports team such as pickleball or badminton but had to give it up due to high pain levels. You soon lose connection with the other team members because you no longer have anything in common. Fibromyalgia can also strain marriages. A study conducted by the Mayo Clinic reported the following: 1. One out of four felt that his or her spouse didn’t understand fibromyalgia. 2. One out of ten people reported fibromyalgia helped lead to a breakup. I’m lucky in this aspect. My boyfriend is very understanding and supportive.
Chronic pain sufferers will also isolate themselves socially. I know I have. Going out or to visit people can become exhausting. I’m always hesitant to go too far from home because I’m scared the pain or fatigue will go out of control (which happens often). To those reading this who do not have fibromyalgia, I want you to know we do want to engage but dealing with chronic pain makes it difficult. The friends who still message, stop by for visits and understand why we cancel plans spontaneously – thank you!
4. Yearning to do things your body no longer allows. After being diagnosed with fibromyalgia, my entire life changed. Pain and fatigue put a major damper on how one used to live their life. I miss being spontaneous and taking random road trips just because I could. Now road trips have to be planned carefully and around how I feel. I’ve had to learn to let hobbies go and learn to love new hobbies. I used to love to walk long trails and hike, now if I push myself to do these activities, I know I will be bed ridden for days to come. I’m slowly learning I have to be ok with driving around to look at the sceneries more than hike through them. I used to read a novel a week. I’ve had to learn to love audiobooks, because I can’t concentrate enough to read the sentences to myself. I even tried other activities such as paint by numbers, diamond painting and began puzzles again. What do you miss?!
5. Accepting you are chronically ill. This is one of the hardest things to do. If you have not read my blog on the grief cycle, please do! Acceptance is the last step in the cycle – a very difficult step at that. Lots of people never really learn to accept being chronically ill. we just learn to be ok with it as life carries on. It took me almost three years to accept my condition and not be so angry all the time. There is no time frame to accepting your reality – of being chronically ill!