You Are Not Alone

When you realize that the life you once knew is lost, all your hopes and dreams are shattered and everything you worked so hard to achieve has slipped through your fingers-You are not alone.

When you want to give up because each day is filled with such excruciating pain that there isn’t room for anything else and you realize that not only is this not living, but it’s also not surviving.  It’s just suffering and you can’t imagine continuing this existence for a lifetime-You are not alone.

When you want to scream because doctors are dismissive and disinterested in your symptoms, even though it’s their job AND you’re paying them a lot of money to help manage your chronic illness-You are not alone.

When you stop opening your mail because your medical bills have piled so high that you are afraid to even look at how much further you’ve fallen into debt-You are not alone.

When getting out of bed is just not an option and even though you logically know that you didn’t have a choice in the situation, shame and guilt shares your bed the rest of the day-You are not alone.

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When you had to cancel plans with friends or family, again, and logically you know it’s the right choice for your body, mentally you feel guilty for cancelling, worried they won’t understand or believe you, worried they’ll stop inviting you out, worried you inadvertently hurt them, shame for not overcoming your body once again, grief for a time when you never had to cancel, and lonely knowing you are home feeling rotten when, if life were different, you could be out with loved ones-You are not alone.

When you do brave going out with your loved ones, but your body quits on you part way through putting you in an embarrassing situation while you struggle to get back home only to arrive home grateful to have made it but completely humiliated-You are not alone.

When you realize that the limitations and stresses your chronic illness has brought to your life have created the constant companions of fear, anxiety, and depression-You are not alone.

When strangers and loved ones speak thoughtless and ignorant words about your illness (often without even realizing it) that really cut right to your core-You are not alone.

When your friends and family don’t understand or sometimes don’t even believe your illness and turn their back or even walk out of your life and leave you heart broken with a devastating chronic illness-You are not alone.

When even those who stay, who really love you, who really want to help and try very hard to understand your situation, unfortunately unless you have lived chronic illness it’s impossible to truly grasp. This inevitably leaves you feeling isolated and lonely in spite of all their efforts-You are not alone.

You are not alone, because I am right here along with countless others struggling through the same trials that accompany chronic illness.  We want to share our experiences and as a community, our support, so no one has to suffer alone.  So look no further, because as of right now-You are not alone.

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What about you? What is your story and how would you help someone else with chronic illness?

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About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in anxiety, caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, confused, coping, depression, disability, fear, fibromyalgia, friends, friendship, health, humor, pain management, rheumatoid arthitis, struggles, suicide. Bookmark the permalink.

16 Responses to You Are Not Alone

  1. Suzanne Grabber says:

    Your blog post “You are not alone” sure came at a good time for me. Guess what? I was feeling pretty alone. Had to cancel lunch with a friend that I cancel on way too often to go to a doctor appt. Cancelling again. For ANOTHER doctor appt. That y fibrofog allowed e to forget about til my computer reminder program reminded me. I can relate to almost every item in this post. Thanks for writing it.

  2. Mary Ann Green says:

    This article is a home-run. This is my life – and knowing that you and others are experiencing what I am – helps. I wish no one ever had to feel this way. I wish everyone the strength to carry-on.

  3. Even though I wouldn’t actually want anybody in the world to suffer from chronic pain, it brings me comfort to know that I am not alone….that somebody understand why I have to cancel plans, why I sleep 10-11 hours a night, why I’m depressed and frustrated and angry, why I’ve mostly given up on the medical community, why I don’t want to leave the house, why I fear the time of the month when I have to request my pain medicine prescription, why I am so sad thinking about what I’ve lost (even though I’ve gained some amazing things too), why I don’t talk about how I feel both emotionally and physically, etc. Thank you for this post. Thank you for being brave!!!

  4. Juli Manz says:

    I love to read your blog. You’ve written some great stuff lately, but this piece “You are Not Alone” strikes a resounding cord — I think for all of us sick with chronic pain/illness. We lives such different lives from mainstream, different from our “old” lives, that one cannot help but feel alone in a room crowded with loving friends and family. Personally, I’ve attempted suicide twice to try to end my chronic pain; God had other plans, and I lived. Now I follow the Semicolon Movement, which promotes suicide awareness and prevention, especially for those in high risk like we who live with chronic pain/illness. So, to constantly remind myself that even though my life is filled with non-stop pain, I don’t need to choose a period to end the sentence of my life. Instead, I choose a semicolon –a slight pause — maybe a trip to the hospital, or a new doctor, or a double dose of pain meds. But I don’t choose a final end anymore. (And I recently tattooed a semicolon on my left forearm, in bright orange — the color of my particular disease — for a visual reminder of my new conviction.) If there was something I would share with someone chronically ill, there would be two things: The Spoon Theory at butyoudontlooksick.com and the Semicolon Movement. The Spoon Theory because the author does such a great job of summarizing to outsiders what it’s LIKE to be sick, and the Semicolon Movement because it teaches HOPE in a situation that, at times, feels completely devoid of hope.

    Every time I see your Then Everything Changed in my subject line, I kick back, get comfortable, and know I’m in for a good read. Thanks for your hard work.

  5. Mary Ann Green says:

    I’m breathing a little lighter through the pain, thanks to everyone.

  6. Nicole Chandler says:

    My husband is dealing with chronic back pain ever since he was hurt on the job as a cop. So by extension our family is dealing with chronic pain. It affects everyone and is very isolating. I
    The article hit very close to home!

  7. Nicole Chandler says:

    My husband is dealing with chronic back pain ever since he was hurt on the job as a cop. So by extension our family is dealing with chronic pain. It affects everyone and is very isolating. I
    The article hit very close to home!

  8. Carole says:

    Thank you – I really needed to hear this tonight. And thank you also to the wonderful comments shared.

  9. Barb H says:

    I have chronic lower back and neck pain due to a genetic condition. I also have several mental illness diagnoses, so Drs didn’t believe me when I’d say how much pain I’m in. I’m now on muscle relaxants, opioid pain killers and I get steroid injections in my lower back. This blog is very helpful, because feeling alone makes everything so much worse.

  10. Teresa says:

    Thank you, I’ve recently been diagnosed with a couple of chronic illnesses and I’m struggling. My family and friends are supportive but only in the way they know how so I put on my happy face every morning and get through the day as best I can. And as I try to go to sleep at nite I may cry a bit just knowing that I face it all again tomorrow.

  11. chinweilee says:

    I don’t suffer from an officially labeled chronic illness but I am going through severe insomnia (anxiety and all that) for years now, and completely relate to the posts you have written it has illuminated my situation because it’s all I have been experiencing exactly, although I am aware so many of you out there have it worse, so much worse sentences. I wish unending, inexhaustible love and peace upon every sentient being who is stuck in pain and suffering. Awareness of chronic illness needs to spread in society, to eventually reach the same level of immediate hushed sensitivity at the mention of ‘cancer’ and I fully intend to play a part in that process.

  12. Michelle says:

    I agree with the first comment
    As i was praying for some closure, a voice said youre not alone. I dont know what that was if it was God I felt at peace afterwards. The first article that I came across as soon as I heard that was your blog post. And all of what you said that has been hovering over me you mentioned. It came at a good time, thank you for that. We truly arent alone

  13. nightowl223 says:

    Thank you.

    This … this is full of powerful words and concepts. And this is exactly what I needed. I’ve suffered chronic, debilitating pain in my SI joint since a fall in February of 2012. I’ve lost the ability to work, the pain and the meds make me incredibly forgetful, and the list of things I can no longer do is SO much longer than the things I can do – and I have yet to convince the disability people that, no, there is no work I can do that would get me gainful employment.

    Gainful employment! Ha, what a joke! Want me to do a desk job, shuffling papers? What happens when I forget or lose a major whatever in my first week? Want me to do warehouse packaging? What about when I am 5 times slower than the next worst worker there? Want me to do over-the-phone work? What happens when I lose track of what I have and haven’t called about? Want me to do data entry? What happens when I take so long to correct my typing errors that the company can’t stand to lose that much money on me? And so, again, I have to try to explain to some disability judge why I cannot do what any normal human being would be expected to do.

    And I’m not disabled?? My God, how much further down must I disintegrate before I am considered “disabled” by this state?? When I haven’t danced, or hiked, or canoed, or welded, or painted, or walked through all the shops at the nearest mall, or ANY of the things I used to do and enjoy… and the despair of ever doing any of it again is like a crushing weight on my soul. Still, after all these years. Knowing this is my new normal, and it doesn’t improve from here – it has been the hardest thing for me to do. The next hardest is trying to make this state realise NO ONE would want to hire me for anything… and while I have to do that, reminding myself once again of all I can no longer do.

    To be reminded that there are others wrestling with the same kinds of burdens, the same difficulties, the same feelings, the same despair and anger and confusion and fear… it means a lot to me. I’ll definitely be reading through this blog, and possibly even comment to say thank you again.

    • Juli Wordgirl says:

      I am here with you! My continued struggle is that everyone thinks my physical pain translates into mental illness–how does that work out in their heads? After nine-years of blatant discrimination, I’m currently asking this question out loud, directly to their faces, and it’s finally they who are distinctly uncomfortable. I’m not sorry at all for making them uncomfortable. I’ve been made to feel such deep shame these past nine-years for having a rare pain-disease I did not cause–why on Earth anyone is trying to blame and/or label and/or trick and or ignore and/or anything other than help me is beyond my comprehension! When I read your words, nightowl23, I knew we understand each other. I went through years of struggle before getting disability approved. I’m certain you will prevail. It’s a sad state of USA Social Security Disability Disability Insurance (SSDI) that does not recognize “pain” as a valid disability, but more than 100,000,000 Americans live with chronic pain. That’s about one-third of America’s population! Why do we have to fight so hard for help? Don’t even get me started on the ridiculous opiate “war on drugs,” please!

      My prayers for you and your pain. I have Complex Regional Pain Syndrome (CRPS). It’s considered rare by the FDA because fewer than 200,000 Americans have it. It’s my (Wordgirl) mission to spread awareness of this vastly misunderstood and undiagnosed disease. Please ask your doctor–perhaps your pain is CRPS? There is no cure or treatment yet, but we are extremely hopeful!! Be well, my new friend. Stay positive, and fight on–no matter what: all pain is terrible! Life with pain is extremely hard. Judgement of the chronic pain patient is harsh and fast, as I’ve learned in the past nine-years. Once passed, this judgement is very hard to undo. But it CAN be done! Persist in the fight, and trust in God–that’s what I do.

      Word-up, from your new friend in pain (and spirit), Juli Manz

    • Juli Wordgirl says:

      ·I just read your comment and mine again; I am not suggesting I know more than your doctors. I am simply spreading CRPS awareness, as I do everywhere. I mean no intentional (or unintentional) insult. Thank you.

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