Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)
Dear Invisible Illness Sufferers:
I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?
I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.
It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.
After the imaginary designated time where we mourn our former selves, we give our thanks, grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.
Tell me what you think, I’d love to hear from you.
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Hibernationnow's Blog 
L, I don’t know how I missed this post, I am going through all my unread emails, I thought I read all your stuff…………..sigh. My “before life”? We call it “BA” before Addisons…and “AA” after Addisons. It is how we refer to things and events. sigh
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i know mo, i know.
Warm wishes, Laurie https://hibernationnow.wordpress.com
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Your post on mourning is an excellent one. I devoted an entire fibro/cfs presentation called “Good Grief!” because I thought/think it is a neglected, overlooked, disparaged part of the journey.
My belief is that essentially all life is continually about loss, starting with our mother’s womb. If we deny the grieving it becomes “compounded” and then chronic, just like invisible conditions.
Is grieving something to look forward to? No. But it is something to look backward at and acknowledge. Ultimately all grief is about loss of the dream we held/hold – not about the reality of what is.
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I would say it’s definitely a combination of both!
Warm wishes, Laurie https://hibernationnow.wordpress.com
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Mourning is not something I want to do.Yes, I have diabetes, hypothyroidism, and Meniere’s Disease, but that’s not how I want to define myself. Since these diseases don’t hurt (not yet, anyway), I suppose that’s easy.
The part of the person I once was that I miss the most is youth. As often happens when we lose something, I wish I had appreciated it more while it was here. Getting older does hurt, literally. Joints fail as arthritis sets in. Organs no longer do the job they once did. All sorts of little mysterious ailments pop up. Sleep can be elusive. Meh.
My father used to moan and groan, “It stinks to get old,” and I would want to say to him, “Oh, get a grip!” I feel guilty about that now.
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I adore you!! My mother says getting old is no fun. She’s right. getting older with chronic illnesses, worse.
Warm wishes, Laurie https://hibernationnow.wordpress.com
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That is a great idea. Now in my 10th year of having chronic pain, I still feel such a profound sense of loss. Maybe it was because it was only last year when I was told for certain that I wouldn’t get better, or because there is a little bit of me that just wishes and hopes that I’ll wake up and I’ll be well.
Sometimes I think that I have a handle on it, that I can move ahead with my head held high. Then I come crashing down to earth when reality smacks me round my face. I’m constantly in pain and it has taken away my career, friendships, hobbies, freedom – it is hard to accept something when so much has been taken away with so many restrictions. It is difficult to find the positives in such a situation.
I see my contemporaries with their careers, partners, houses and babies – and there is an ache for the life I *would* have had. Now, my greatest achievement of the day is brushing my hair or holding the kettle.
And you know what? Being in constant, chronic pain every second of every day is ugly. I can understand that there are people who meditate and have a very positive approach to their illness; but for me, sure, I know that being calm = having control over the pain, but there is also a part of me that is so damn angry. What it boils down to (and I’d like to meet the person who truly thinks otherwise) – is that it is all so unfair, so of course we need to mourn. And mourn again and again and again, because we will never truly get over it.
The best bit of advice I got from How to be Sick is that most people fall sick and then die, we just have the fall sick part earlier.
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I am SO GLAD you wrote. I understand how you feel!!! I do miss the part of me that I have lost. I think most people do too. You can count me as a friend, one who understands your pain. I write a lot about Fibro. Thanks for commenting. Laurie
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I think we mourn past lives as part of the process of coming to terms with whatever limitations me might have now. In order to “own” a chronic condition, so it doesn’t “own” you. Sometimes we need to go backwards to go forwards.
(I haven’t expressed it as I invisioned my answer but it’s 2:00 am, and after midnight, I’m at a lost for words.)
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It’s an interesting notion, to mourn our old selves – perhaps it’s different for those who cope with mental illness or maybe it has to go on a case-by-case basis. I know I’ve stopped saying I’m bipolar or manic-depressive on the advice of a wise therapist and now, if put in the position of having to say anything about my disorder, I say I HAVE Biporder 2. As my therapist puts it – if you have the disorder, you can assume control, if you are the disorder, it owns you. That made a surprisingly big difference for me – just semantics but there you have it. Do I mourn my former self? When I was undiagnosed, unmedicated and untreated, and therefore non-functional? Not a scintilla … I also have a sleep disorder that went undiagnosed from my early teens (I didn’t find this out until I was almost middle-aged) and that missed diagnosis was partly responsible for all that came after … As the psychiatrist/sleep doctor who finally discovered it said, “No wonder you’re suicidal, you haven’t slept in years. Literally.” So I regret the stigma that still accompanies mental illness and how hard it is to diagnose and treat. But would I go back to the way I was? Not a chance.
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Hi, I agree with you 100 percent! it is a case by case situation. in your case it was a blessing that you were diagnosed and that you have an amazing therapiest!!! You are lucky. What he/she said is so meaningful. Thanks for commenting. My illness(es) are physical so I have no energy and everything hurts all the time,with no relief. I miss that past.
Warm wishes, Laurie https://hibernationnow.wordpress.com
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Forgive me for going off on you – of course you were very clear about your situation and I would not for anything trade places with you. I do understand the difference between what you had and what you have and admire greatly that you have been able to come to terms with as much of the good part of now as possible. Oddly enough, depression can deplete a person badly enough that energy becomes but a faint memory and suicidal ideation leaves one in pain on a constant basis – I know I am fortunate in that I rarely revisit that place… I do feel for you though and hope there is a breakthrough in your treatment soon. Wishing you peace.
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Absolutely NO NEED for an apology!
Warm wishes, Laurie https://hibernationnow.wordpress.com
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I don’t mourn my old self. I’ve been sick most of my life in one way or another.
But beyond that…I don’t think I’ve lost me. Yes there are things I can’t do any more, or things I can’t do as well…but there is so much I’ve learned about me and others that I feel like a more well rounded person.
I’ve changed.
People change, even when they aren’t sick.
I’ve grown. I hope I’ll keep growing.
Do I like being ill. NO. But I know I will be alright….I may always live in pain, feel off balance, have migraines, vertigo…..and I’ll always be deaf without my technology…but I’m ok. I have some great people in my life who listen when I need it (thank you for being one), and who will cheer with me when I overcome a small challenge. I still laugh a lot, and cry for things…but normally it’s not about my station in life. Often it’s for others.
I love Toni Bernhard’s book. It is inspiring. I’ve read and read it….first all the way through, now I pick out parts I need at certain times. I’d love to buy one for everyone in the group! It has helped me so much. (it has also helped me deal with my relationship with my family)
So no I won’t mourn my old self. I actually like who I am on the inside, where it counts, more now than I did before.
But I will celebrate life! My life, and the lives of those I love…and even those I find challenging (you know what I mean)…I breathe in the hurt, pain, anger….ect….and breathe out love, healing, hope to others.
I hope you are feeling as well as you can today.
(I’m feeling much better.)
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I am SO HAPPY FOR YOU!!!
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