autoimmune

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    Chronic illness plus a cold or flu? Insult to injury

    Am I just a cry baby or does anyone else go a little crazy when dealing with a bad cold or the flu on top of the normal symptoms of your chronic illness or condition?

    Part of the problem is that for, me and I’m guessing many, many others who find themselves here, my immune system is compromised, so what would normally be a ten day virus turns into months of suffering.

    It just breaks me every time. It’s a cold! Yes it’s a cold, but usually it’s a cold that turns into bronchitis or a sinus infection or god forbid pneumonia. And it feels like it lasts FOREVER!

    That inner store of strength that you rely on to get through hard days is depleted and for me that leads to a spike in depression, emotional upset, and frankly anger. I can only binge watch “Outlander” so many times as a form of distraction! My relationship with our living room sofa is already borderline inappropriate. During a siege of “normal person” illness the love/hate bond between myself, my blanket, and my favorite pillow is unbreakable.

    Like so many of you, I’ve been struggling with my health demons for quite a while. Adding a common cold should be an easy assignment, but it always proves to be the straw that broke the camels back for me. Insult to injury. Salt in the wound or any other platitude you can muster. I wish you all luck during cold and flu season and I truly hope you come through it all safely. #Cancer #autoimmune #cold #Flu #Depression

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    Illness and Acceptance

    I recently had an important revelation.

    In the five years since first experiencing chronic illness, I have never actually accepted its presence in my life.

    You see, as somewhat of a "spiritual" (though I hesitate to use that overused term) person I have grown to view the world in a very fate-based way. I believe that the unfolding events of our life are all deeply meaningful and I appreciate that our hardships in life all happen for a reason.

    However, I have never been able to extend this line of thinking to my health. In my mind, my illness was the golden exception to this worldview- God's terrible mistake.

    Whenever I have been in the middle of a particularly bad flare-up, I find myself fixated on one stressful line of thought. This should NOT be happening.

    When I reflect back on periods when illness brought my life to a halt, I would feel tension and stress. I would think of all the wasted time, the days spent in bed, and the unmet goals and would despair. The existence of these periods felt wrong, painfully wrong.

    Why then, has it been such a challenge to accept my path through life, warts and bumps and all?

    Why has it felt so impossible to accept this part of myself? To come to peace with the fact that I have lived an atypical path of alternating illness and wellness?

    I can think of two main reasons.

    The first has to do with identity. As someone who has always identified as a motivated high achiever, chronic illness has come into direct conflict with my self-perception.

    Stripping away my ability to meet my goals at times, (financial, career, etc) has felt like a direct challenge to my true self, my achieving self. I have perceived it as an obstacle whose purpose is sole to knock me off my correct path in life.

    But of course, whether I like it or not, my illness has been a part of my true journey on this earth. Outside of my judgments of it, it simply is part of my life, whether I like it or not. Therefore It is inherently part of my true path in life, simply because it ion my path.

    The second reason it has been so hard to accept my illness is that I have often perceived myself through the eyes of those around me.

    Very rarely in my life have people been able to validate this path for me- and who could blame them, for how could you understand such a foreign experience as chronic fatigue without firsthand experience of it?

    For a long time, have been unable to validate myself in the face of being unacknowledged or dismissed by others. This has led to a bizarre state of mind whereby others' denial of my reality has ultimately caused me to doubt and deny my reality myself.

    Due to the pain of being misunderstood or labeled a hypochondriac, my illness has become something of a hushed secret. I have avoided talking about it with those around me, I have hidden my symptoms and gone absent from my relationships during my flare-ups. In this way, by hiding and minimizing it from others, I have hidden and denied my reality to myself.

    Regardless of the reasons for resisting my illness, I finally felt a sense of peace when I actually decided to accept it as a part of my journey.

    No longer does my health history need to be a shameful secret, something I avoid speaking about for fear of making others uncomfortable.

    It is a part of my life path, and therefore a part of my purpose. And I can incorporate this purpose in all kinds of small ways, like bringing more compassion to others with health issues. Or choosing to write about my experiences openly and honestly. I could even see myself moving into a role within the health field one day, with the expertise of someone who has walked this path for many years.

    My illness does not have to be a destroyer of opportunities. It can also be the bringer of them.

    #CFS #Fatigue #CIRS #autoimmune

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    The Comparison Trap

    It sometimes seems that God was in a macabre mood when he shuffled the card deck of our lives.

    Being both an ambitious person and a chronically ill person can be a torturous combination. When we are well, or less ill, we are freed from our physical confines. Our minds race to all of the goals and dreams that we long to finally accomplish - the life we have always wanted comes within reach as we feel called to take action toward our goals.

    When our illness returns we crash back down to reality. What seemed so possible and so real, has now disappeared far off into the distance, barely visible. We exist in a lurch between hope and despair, not quite able to trust the trajectory of our own lives.

    Worst of all, it is perhaps the comparisons with well people that make us feel our worst. We Humans are experts in comparing ourselves, and the rise of social media serves only to exacerbate this problem. We cruelly cross-analyze every aspect of our lives with those around us- compare our financial situations, our outward appearances, and our major life milestones.

    For the healthiest of people, this kind of behavior is already unhelpful; however when someone with a chronic illness falls into this trap it is especially problematic.

    In comparing ourselves to healthy people, we end up creating an entirely unjust contest in our minds; discounting the time and energy that we have lost to our ill health. We ignore the cumulative effect of periods of severe unwellness that may have disrupted our routines for weeks or months.

    We ignore the immense advantage gifted to someone able to focus on their goals without ever having to worry whether or not their body would be up to the task.

    We ignore the financial effects of expensive treatments or long periods of non-work.

    Quite simply, the healthy person and the chronically ill one are both human, and yet they inhabit vastly different worlds. Dealing with the burdens that our illnesses give us already presents us with enough challenges without the added torment of coming up inferior to someone who has had a completely different set of life experiences.

    It is the least we can do to make a point not to compare our life trajectories with those people who have not experienced chronic illness. We have suffered enough.

    #CFS #ChronicFatigue #CIRS #autoimmune #Mold toxicity

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    Anyone else experience this?

    I was wondering if anyone else has flare-up…cycles? If so, do you know why?
    For me, I have GI symptoms, muscle and joint symptoms, and neurological symptoms associated with my condition. When I begin a flare up, the GI symptoms flare at once, then once that flare ends, it triggers a joint flare, then when that one ends, it triggers the neuro flare up. Like, each category has to flare before the whole thing is over. Is there a reason? #autoimmune #chronic #Seizure #GastrointestinalDiscomfort #Jointpain #Inflammation

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    Stapes surgery: your thoughts/experience #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

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    What's your story?

    6 months to get diagnosed, and 4-5 years learning to manage symptoms. But it does get better.

    #diagnosis #autoimmune #MultipleSclerosis #Depression #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Caregiving #Disability #Support #myMSstory

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    Aug 18th

    Today iv been weak in my hips, it feels hard to support my own body up, my hip area is super tender and irritated, I also started my period today witch adds to the pain and tender weakness in that area.
    My tummy has been irritated all day, no painless moments and my whole nervous system feels on over drive... Anyway it's still a good day, iv gotten some things done and am feeling happy
    #AutoimmuneDisease #autoimmune #Fibromyalgia #AnkylosingSpondylitis #EhlersDanlosSyndrome #sore

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    So tired.

    A doctor who assaulted me is suing me for telling for defamation because I told people about it. So it wouldn’t happen to other people. Anyway, I need a good lawyer bc this world is disgusting.

    Anyone else sick of going thru all of this alone? The pain. The mental exhaustion. feeling emotional. I feel like I can’t trust anyone ever again from how badly dating has gone. Why do so many people lie? It doesn’t make sense to me. Quit running. Fave whatever it is head in. You will face it eventually and you nor I can run forever. You’re only delaying the inevitable. #sickofbeingsick #autoimmune #Fibromyalgia #Crohns #Epilepsy #POTS #Hypothyroidism #tiastrokes #Migraines #ChronicPain #Neuropathy

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