Hey there warrior girls! It’s time for our first Member Spotlight of 2012 and–drum roll please–we are proud to shine the light on Shannon from Toronto,Canada, who sends us all sunshine and smiles.
Shannon is a proud member of the Fight Like a Girl Club and blogs over at Living with Fibromyalgia. She can also be found on Twitter as @LdyLarke. She lives with chronic pain, fibromyalgia and chronic fatigue.
Here is Shannon’s take on living life with chronic illnesses:
What would the title of your illness story be?
It’s a long road from undiagnosed to invisible illness.
Who were you before you got sick? Who are you now?
I was a gregarious, vivacious, physically active, attractive and sports-minded person who enjoyed life and lived life to it’s fullest. Now I’m homebound, frequently angry and frustrated, severely overweight due to pain, medications and depression.
Sometimes I feel like all the things I enjoyed to do have been taken from me because of illness and my inability to work due to disability from illness.
How has being ill affected you physically, emotionally, socially and spiritually? How do you cope with these changes?
Physically, I am simply incapable of doing much of anything at all. I must now ask for help for many “normal” day to day activities. If I want to get something done or run an errand I have to wait until my hubby has time or can do it himself. I don’t have the option of just going out and do it myself anymore. Even when I can, my energy and physical ability to do so is so depleted that I could never get what I wanted done anyway!
A simple visit to my doctor’s office often lays me out for 2 to 3 days afterwards!
Emotionally, I’m actually doing “O.K.” I had a severe bought of depression with agoraphobia in the early 2000’s. I managed to get out of that dark black hole of misery and I refuse to ever allow it to happen again.
Spiritually, I’m still the same gentle and kind soul I have always been. I’m just more likely to turn the other cheek and avoid confrontation, because I find that confrontation of any kind physically hurts me.
Socially, I would be considered to be completely inept! I don’t socialize due to my health and financial situation. I have no close friends where I live. But don’t feel sorry for me! My online social life is plenty enough for me.
Do you look at your life differently now than before you were diagnosed? If so, how?
Being diagnosed with FM/CFS was a revelation to me. My life suddenly made sense. The physical and emotional experiences I have had over the last few decades make sense! I now know that a lot of the symptoms I have had over the decades are not just weird personal quirks or flaws. They are actual symptoms of a real illness that I have no control over.
Now as I slow down everything I do, I find I have a greater sense of patience than I ever had before.
I also find that I look at people a whole lot differently because I have an invisible illness. I now think ‘Who has the right to judge anyone about anything when you have no possible way of really seeing what someone is going through in their daily lives?’
What has been the hardest thing about living a life with illness?
Being chronically in pain has definitely given me a huge hit in the self-worth department. Between the pain, inactivity because of it and pain medications, I have gained a lot of weight and my body image is terrible. I often have negative and demeaning thoughts of myself because of it.
I often don’t feel worthy of anything.
I sometimes feel that somehow I have caused my illness to happen, because of something I might have done. Sometimes I feel that being sick, tired and always in pain is a price I’m paying for something I said or did in the past. Now don’t get me wrong here, because I haven’t done any horrible or illegal things … I think of it as being a “I played hard and now I have to pay hard” kind of thing.
Who and/or what has helped you cope with your illness?
Social media sites (especially Twitter) and all the wonderful people I’ve met there who are just suffer just like me. Finding support from people who know exactly what you are going through is so important.
I have found a daily journal extremely helpful to me. I also seek to help others by blogging about my personal experience with FM/CFS. I hope my writing encourages others to speak up to their own family, friends or even their doctor so they can get the support they desperately need AND deserve.
What have you learned from your illness experience?
By expressing how I feel through daily journals and blogging, I have really learned about myself! I’ve become re-aquainted with an old friend–ME! I am slowing realizing that I AM worthy and that I do deserve to live a happy and relatively pain-free life.
What are you most grateful for?
- My husband and caring family who support me emotionally and financially whenever necessary.
- The ability to still walk on my own, even if not very far.
- Most of all, I am very grateful that I am not alone in this.
If you were to give someone advice about coping with your illness, what would it be?
First, I suggest you write everything down. Create a daily journal to help you keep track of what you are feeling, which medications you are taking and all the other things you do to treat and cope with your illness. This is especially helpful if you think you are going to need to apply for disability or financial support.
Secondly, find an online support group. If you have difficulty talking about what you are going through with friends or family, you would be amazed at how truly helpful it is to talk about it to strangers. Those strangers will become dear friends that truly understand you and what you are going through like no one else in your life. You don’t need to use your real name or share your personal details unless you want to. There is no excuse for not reaching out for help. Just do it!
What do you want for yourself and what do you want for others living with your illness?
I want researchers to hurry the hell up and find a solution for to chronic pain.
I want doctors to wake up and start actually listening to patients in chronic pain. And I want doctors to actually care for the well-being of their patients. I’m also tired of drug companies pushing doctors to try out their new drugs on desperate people who only want some pain relief.
I don’t want politics or a patient’s size/appearance to continue to be the reason why so many chronic pain patients do not get the support or relief they deserve from the medical practitioners. Chronic pain really is a serious issue that is not being addressed adequately in North America. We shouldn’t have to beg for pain relieving medication, not ever!
I also hope more and more people to rise up and become advocates for the invisible illness they suffer with. I think that if we got together online, we’d be a massive number of people that could overwhelmingly make a difference.
I hope a brighter light shines on those of us that suffer debilitating pain and anguish in doing the simplest “normal” day-to-day things “normal” people do and take for granted. Because we ARE worthy and we DO deserve to live a “normal” as possible life, just like everyone else.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.