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Inside the Mind of a Chronically Ill Person Debating If They Should Post on Facebook

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Nobody is “normal.”

Everyone is unique.

That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body).

And the places in your mind that change can be impossible to perceive; what is caused by the physical (hey come on, literal viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me, even with the deepest introspection, lines are blurry).

So when you are in this bubble of misery and feeling desperate, many of us reach that crossroad decision of whether to reach out publicly or not. Now, some do so all the time and some seldom do so. I want to share with you, the healthy person, the “normal” person, what may be going on in our heads and where the need to reach out comes from. Because to you, (sometimes frequent) posts regarding how someone is feeling physically and mentally can come off as:

  • Desperate
  • Attention-getting
  • Overly dramatic
  • Whiny
  • Ungrateful
  • Lacking faith
  • Hypochondriac
  • Lacking strength
  • Emotionally unstable
  • Or “_____” fill in the blank

And honestly maybe some people with chronic illness are. But I am asking you to consider grace, and here is why:

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You do stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, and your life may not be perfect or exciting, but it is full.

One day your body starts to betray you. Suddenly all the daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear Earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years.

You start sleeping a lot more, so much more that you start to feel guilt over your “laziness.” Even after a full night’s sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse, you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago. Oh, and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain.

Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bedtime and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep… Now it feels like that all the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you can’t seem to formulate articulate conversation.

As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy.

At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!” you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…
But slowly friends start to drop away, check in less and less, and stop inviting you to things because they know you will just say “no.”

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.

Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You may feel desperate and sad and lonely. Since you don’t see people in person so much anymore you might reach out to your friends online; both your real-world friends and your friends who you met in chronic illness forums and such.

So I am speaking to you, “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention,” talking about what they are going through very publicly, and (sometimes) going into TMI territory… know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were.

They may post because:

  • They want fellowship,
  • They want friendship,
  • They want to both hear and be heard,
  • They need a sounding block,
  • They want to feel normal,
  • They don’t want to disappear and be forgotten,
  • They want to have a glimpse of normalcy and online may be all they have,
  • They don’t see people much face-to-face so “Face”-book is their life.

Hear me now as I write this for my sick brothers and sisters: Everyone needs people! When you are sick and isolated, online is your people!

I don’t believe we are grand-standers or attention getters (at least not most of us). I think we are people just like you whose lives have changed and been shaped by illness and circumstances. All we want is to be normal and healthy. We may covet the little things that most people take for granted, even just taking a walk on a sunny day.

One more thing I want you to know: Worry about the chronically ill people who don’t post and instead stay quiet. They may be experiencing everything the communicators are but internalizing their pain versus reaching out.

It’s about having an outlet, versus internalizing everything. Isolation, versus reaching out. Honesty, versus putting on a happy face. I have seen too many of the “quiet one’s” obituaries online. Please also know the anxiety a person may go through on what to post and what not to post. It is so hard to judge because (especially) on a bad day, perspectives may be askew… and the reactions from people can also vary greatly.

You get the positive feedback from the chronic illness community: “Thank you so much for sharing, I am not alone.” “So glad to hear another person’s perspective.” “Thank you for being honest and blazing a trail for others that will come behind you.” This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of pain.

But, you also may get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you may get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you.

In closing: why am I posting this? I will tell you it’s not for attention or sympathy. I want to give a voice to the silent struggling ones. I want to advocate for those whose families don’t believe them. I want to open a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member. So consider grace and understanding first when encountering someone who has been struggling for a long time. We have so much to learn from each other.

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10 Quotes That Give Me Strength as a Person With a Chronic Illness

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Throughout my battle with chronic illness, I have often found comfort, hope and strength in literature. These words have carried me through the darkest of times, and I feel that most people will be able to find strength in them, too. May they bless you as they have blessed me.

1. “Some women are lost in the fire. Some women are built from it.”

— Michelle K.

2. “The biggest lesson I’ve learned is: It’s OK. It’s OK for me to be kind to myself. It’s OK to be wrong. It’s OK to get mad. It’s OK to be flawed. It’s OK to be happy. It’s OK to move on.”

— Hayley Williams

3. “Being brave doesn’t mean you aren’t scared. Being brave means you are scared, really scared, badly scared, and you do the right thing anyway.”

— Neil Gaiman

4. “You will be too much for some people. Those aren’t your people.”

— Karen Salmansohn

5. “Scars are souvenirs you never lose.”

— Goo Goo Dolls

6. “It’s a beautiful thing to have lungs that allow you to breathe air and legs that allow you to climb mountains, and it’s a shame that sometimes we don’t realize that that’s enough.”

7. “We are all dying, one breath at a time. Health will fade, bones will become brittle, and none of it will matter in the slightest. No stars burn for the same amount of time, but each is still uniquely beautiful. Nothing in this life is going to stop someone from loving you for your fire. You’re a different star, born to shine unlike the rest, but don’t for a second think it makes you any less beautiful.”

— William C. Hannan

8. “At the end of the day, we can endure much more than we think we can.”

— Frida Kahlo

9. “Whatever you are physically — male or female, strong or weak, ill or healthy — all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”

— Cassandra Clare

10. “I told her once I wasn’t good at anything. She told me survival is a talent.”

— Susanna Kaysen

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To Spoonies in America on the Eve of Trump's Inauguration

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Dear Spoonie Heroes,

These are scary times. We don’t know what’s going to happen to the Affordable Care Act or other government programs we rely on and care about. You have a right to be worried – for yourself, for your neighbors, for the country. But, I urge you, don’t let that worry get the best of you. It will make you sicker. And no one understands that better than you.

Never has there been a more important time for us to practice self-love and take the best care of ourselves that we possibly can. From a fuller well, we can better support ourselves, our spoonie tribe, and the other people we love. Tensions are high, people are freaked out. I’m sure you’ve seen it on your social media feeds and felt it out in the world, if you get to leave the house. We are more sensitive and we need to do all that we possibly can not to absorb the stress of others. Drink tea. Meditate. Say your mantras. Breathe. Breathe. Breathe. And then breathe some more. In doing this, we can be examples for our friends and family who may not be as skilled in the art of self-care and stress mitigation as we are. Let’s face it, we’re the experts.

If you’re anything like me, your chronic health challenge has taught you a thing or two about what’s most important in life. Maybe you care less than you used to, or none at all, about other people’s opinions. This is because you know that caring about that is a waste of your precious energy. Let us demonstrate our knowing by taking action – personal, political, community, whatever is accessible. We are powerful. Now, more than ever, we must stand firm in that power and share it with the world.

Keep healing like a boss.

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To U.S. Senators, From a Person With Chronic Illnesses

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To United States Senators:

I’m one of the 117 million Americans who have “one or more chronic health conditions,” according CDC statistics from 2012, and I’m terrified you will revoke my health insurance. I’m not here to scold you or tell you your ideas are wrong. My purpose is to educate you about those of us who aren’t fortunate enough to be born healthy.

We aren’t “bums” abusing the system and looking for handouts. We’re real people with jobs, children, spouses, families and friends. We happen to be a little less healthy than the majority of the population, but we aren’t less valuable or less deserving of fair treatment.

I admit that the Affordable Care Act has its flaws. Up through December, I was paying over $400 a month for individual health insurance. I received no subsidies because I’m married and our income is just over the threshold for aid. My husband and I struggled to afford it, but we both understood that the financial burden would be much higher if I didn’t have health insurance. I understand and support the need to revise and revamp our current health plan, but if the Affordable Care Act is repealed without a concrete, comprehensive and immediate replacement plan, millions of Americans like myself will find themselves unable to afford care.

I have Crohn’s disease, asthma and migraines. If you’re unfamiliar with Crohn’s disease, it’s a chronic autoimmune disease that primarily exists in the intestines, but it can affect other parts of the body. I experience digestive issues, as well as severe joint and back pain when I have a flare.

Since my marriage a year and a half ago, I’ve been admitted to the hospital or in the emergency room five times. Even with insurance, my husband and I had to create a GoFundMe account to help us pay my ever rising medical bills. A single kit for my weekly Humira injection costs about $2,500 without health insurance, and I receive two kits per month.

The most important clause of the Affordable Care Act guarantees that insurers cannot deny coverage based on preexisting conditions. This isn’t a matter of budgets or partisanship — this clause ensures a basic human right to health care in America for those of us who need it most. If I am denied coverage due to health-based discrimination, I won’t be able to afford medications that have given me the ability to live a fulfilling and active life. 

By repealing the Affordable Care Act in it’s entirety with no plan for replacement, you’re telling us, the sick and disabled, that our lives aren’t important. It seems like it doesn’t matter to you if we’re confined to our beds for the rest of our lives or meet an early death.

We’re the people who will face the most challenges if we’re excluded from the insurance system. So I am urging you, begging you, to please consider the millions of people you’ll be hurting.

We are not statistics. We are living, breathing Americans, and we deserve to live the best lives we can. 

Sincerely With Hope,

Shannon Adams

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To Those Who Think Claiming Disability Benefits Is 'Scrounging' the System

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Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate is the stigma attached.

So here it is. I’m 30 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well-paid, full-time job. Now he’s stuck with the label of “scrounger.”

Firstly, I’d like to address my husband (and anyone else on a carer’s allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went around to a lovely old dear’s house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a “scrounger?” I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So please think about that when you assume someone who is a carer has the easy option.

Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologize for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point of collapsing in my workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughter’s school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child while on benefits is a whole other debate), so in order to function I had no choice but to give it up.

So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain (which is the best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d love to work. I went to university. I was supposed to have a career. I had a plan!

But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have of ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are “scrounging scum.”

Follow this journey on This Little Life of Mine: Living the Nightmare With a Smile on My Face.

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A Letter to My Friends Explaining Who I Am Now That I'm Ill

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Dear friend,

You may have known me before, during my healthy days. You may know who I used to be. Or I may have met you after this medical mess began; you may only know this me. But this letter is to all of you. If you’re in my life, and you want to understand, this is for you.

If you live a distance away, I wish I could see you more. I dream about what my life would be like had this illness never taken over. I would be the first to take a plane to visit my friends. I would take the train to have lunch and catch up. I would drive many miles to have reunions that would bring back memories of childhood, high school, and college. This is how I wish I could be: independent, spontaneous and active. But there is so much you don’t know. If you can be open minded, I’ll try to explain why I can’t be this person that I truly am deep down inside.

I drive minimally, and there are some days I don’t drive at all. The weakness in my legs makes it impossible to hold the pedal down at times. Even on great days, my strength only allows me to push the pedal for short drives. Taking the train means that I must walk when I get to my destination. Walking as my only means of transportation through a city is like setting myself up for failure. Even using cabs requires standing that my body cannot always handle. And flying?  Getting through an airport with weak, shaky legs is a very anxiety-producing experience.

These are not excuses. These are real life limitations that I am dealing with. I would give anything to be able to live my life as I wish, but life is not always fair. Please, continue to invite me. But, please, always understand that when I say I can’t, it is a matter of fact and not a matter of choice. There is never a time when I don’t wish I could be more social.

It is nearly impossible to explain how my body feels. My legs don’t take me the distances that yours do. They wobble and shake and begin to hurt from small amounts of walking. My arm muscles are very sore from the moment I wake up and only worsen with use. I know what it feels like to be well. Somewhere, in a deep crevice within my brain, I can remember what healthy feels like, and my body is nowhere near there.

You ask what is wrong with my body. I desperately wish I knew. Could it be from my autoimmune thyroid disease? Likely. Could it fall into the realm of chronic fatigue syndrome? Possibly. Am I having mitochondrial dysfunction? Yes, but with an unknown cause. The one thing I know for sure is that this is a real, life-altering muscle condition.

I could go on to explain to you why I can’t always bring both children to a birthday party alone. Or why I can’t always meet you for a play date with my children when my husband is at work. You may wonder how my family goes to the aquarium one day, but the next I’m unable to walk much. But I’m going to simply ask you to believe me when I tell you I can not. I am doing the very best I can given my situation. And I hope you can see that.

I want to be the best friend that I can be. Life has been a tremendous struggle for me over the past decade. I really have no words to explain how frightening, stressful, and difficult it has been. I take each day as it comes, never planning very far into the future. So the next time my disability affects our friendship, I hope you’ll remember my words. I hope you will try to understand that I am still the same person deep down inside. And I need you now, more than ever.

Sincerely,

Your chronically weakened friend

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