Reflections on Invisible Illness Awareness Week
Invisible Illness Awareness Week is nearly over. I am sitting at the computer reading through some of the many the blogs, articles, comments and more that people have been posting on their experiences facing a world who does not understand their pain.
Wow.
Truly. . . wow.
You have been refreshingly honest, yet hopeful.
You have shared your pain, but kept it in perspective.
You have shared your hurt feelings, but without bitterness.
I am in awe of all of you who have shared your hearts. . . and your hopes.
Here are a few of the things that I have read that touched me deeply.
- I get so depressed when people just don’t get why I don’t or can’t do things they are so unaware of the pain and exhaustion. So, I just have been trying to get the message out there [about Invisible Illness Awareness Week]!
- Between work, pain, fatigue and friends I’ve become rather isolated because of it all. But taking it just one day at a time.
- I have to take so many medicines, and I am so just so tired of the whole thing – that is until I read this article. After I wiped away the tears, I began to realize that I have to start to really ‘live’ with the fact that I will have to take some of the medications for the rest of my life – and that’s ok.
- I attempted suicide in 2004 because the burden of pain and emotional distress was too much for me to continue battling. It was an eye-opening experience where I learned that I had to live for my three children. They were the reason that I decided to call my husband and tell him what I had done. And it’s still because of them that I continue to push through day after day of pain. God spoke to me that night and said to me, “You have three babies downstairs.” That voice was so loud and clear and distinctly not mine. I knew it was Him telling me to live for them. So I did.
You may not be surprised about the pain that people feel, but I also hear so much hope.
You have shared things like. . .
- So I’m here to encourage all of you to live. There can be joyous moments in between the pain.
- The point is, think of things that you are capable of doing, that you really enjoy, and do them! Don’t let your pain take over your life! Your pain does not define you
- Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.
- I shared the hurt I felt and explained how I did not want to feel pitied or be a burden. My family and friends reached out and I opened my heart and let them in. Something happened, something magical that brought us each closer to one another.
It is so easy for illness to cut the confidence, attack our personality, and end relationships. Each of you have said in some way, “I can accept this illness without allowing it to define me.”
This year’s theme has been “Deep Breath, Start Fresh,” and throughout the posts and the comments, you have put this theme into eloquent words that express this in beautiful ways.
My deepest thanks for all the ways you have helped those with invisible chronic illnesses and hidden pain this week. You have stepped forward, crossed the comfort zone, and shared your heart and your hope and you have made a significance difference.
Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.
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Lisa: Because of circumstances, I’ve been unable to become very involved this year with I.I. Week and I’ve been sad about that. But what I HAVE read and heard has been eye-opening and encouraging.
One of the comments you quoted above has given me more compassion and admiration for someone close to me who is constantly dealing with a similar condition. And that’s worth a lot in itself. I pray for God’s wisdom and love so that I can be more of a support to this dear one, who also ministers to many others.
Lord willing, I’ll pray more and do more to get the word out in the future.
Take a deep breath! Start fresh! By God’s grace, we can do this at any time, not just for one week! :D
Thanks Beth, I think I need that kind of support.
I posted a list, too! http://reflectionsbyrebekah.blogspot.com/2011/09/invisible-illness-awareness-meme-30.html
Last week I found your site and I am really not sure how. God guides most of the thies in my life but I realize things happen in his time, not mine.
That being said I will tell you my “illnesses” (Diabetes, DDD, Osteoarthritis, Psoriatic Arthritis, HBP, Fibromyalgia, Chronic Fatigue, IBS, Chronic Migraines, Diverticulosis, Diabetic Gastro Paresis and a few more) are many, come without warning but “Do Not Own Me”.
I refuse to let them define me, confine me, or play even a sublime role in my life. My family does not understand any of this. I have accepted the fact that this is THEIR shortfall, not mine. I speak often to God, about just little things and walk in my small garden daily. My former job was as a software engineer, three years ago, and I now find myself designing which is very fulfilling. Music is also extremely healing for me. I try to dancewith my two doxies and one bichon daily. But most of all I practice HOPE. Thank you for having this site.
It has been such a blessing to read throught this site. I have chronic pain on my left side that no one can seem to figure out. It has gotten to the point where I am on medication almost everyday. Just because it doesn’t have a name, people don’t understand that I am in pain everyday. I am learning to deal with the physical pain of it all, but the worst part is watching my husband suffer emotionally. It is very difficult and I am so glad you all have a website for people like me. I cannot work very well anymore, and I went down to 10 hrs/week recently. Even with that, I never know which days will be better than others and we are afraid that I will have to quit my job soon. I feel like such a loser having no job, especially just getting out of college, but the pain is more than I can handle somedays.
I just found this site, and im sure it was God that led me here… i suffer from occipital neuralgia, cervicalgia, radicualpathy, nerve damamge, osteoartrhitis, deg disc diseases, and a few others..i have had two cervical fusions and two shoulder sugeries in the past three years…and many other countless invasive procedures…i find myself feeling so alone, so sad, and just so far from my old self that its hard to look ahead….i was crying to myself yesterday and praying , and i asked God to not leave me like this, to look at me and to help me…i begged him to not leave me in this condition..i told him i was scared, and i needed to see his face…this may sound crazy, but when i was done praying, i picked myself up, wiped my face and went outside…i looked up in the sky, and saw a face in the clouds, i saw it forming and i knew it was God telling me that He heard me, and He knows I am suffering…it gave me some hope.. i have been feeling so hopeless lately…and i know that i have no right to feel like that…i have two beautiful children and a husband who loves me…but i feel so out of place , so useless and unable to take care of my family like they deserve to…my daugther cried in my arms the other night compleltey out of the blue …she said why did God pick her mom to be in pain and have surgeries…it just broke my heart… i try so hard to not let her see me suffer..to be in an upbeat mood..but i think lately its getting the best of me…. thanks for listening….