A woman sleeps on a red sofa.

6 Things You Should Know About My Life as a Spoonie

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Life with an invisible illness to anyone that doesn’t live with one is impossible to fully understand.

How can people who have an ordinary, well-functioning immune system possibly understand what life is like? The answer – they can’t.

I have created a list of daily issues that people with chronic illness go through to try to explain to people without our illnesses what life is like:

1. I am constantly in pain.

This is not the same pain that “non spoonies” have. It is an agonizing pain, that prevents me from socializing or going to work. I might not be able to stand up or sit down for long periods. I struggle to understand the pain myself sometimes. My pain normally starts in the tops of my legs, and depending on various factors, it can spread down in my lower legs, or into my back. On a really bad day, it will spread everywhere.

I can’t really describe the pain I get. Sometimes it feels like I have bugs crawling in my legs, other times it is a constant ache and sometimes it is a burning pain. I have been backwards and forwards with various aches and pains throughout my life to the hospital and doctors.

Some times the pain has meant I have been on crutches or had to use walking aids to help me. I also had to have three weeks off work recently for an unexplained pain in my foot. I have in the last month, I have been diagnosed with fibromyalgia. Although this is not good news for me, in a way it feels good knowing that my pain is not “all in my head” and I am not imagining it.

2. I bruise really easily.

This isn’t great for someone like me who is very accident prone. I am constantly falling over, or banging into stationary objects. Doors and my feet are two of my favorite trip hazards. This means when a new bruise comes I am used to it, but I am constantly being asked, “Oh, have you seen that bruise there?” Yes, thanks for asking, I have.

3. My tiredness is not laziness.

The big problem for “spoonies,” is the constant tiredness. It is not laziness! Despite what people who think we can control our weight, by eating less and moving more, will tell you.

For me, it is a debilitating fatigue, caused by adrenal issues, or gut problems causing malabsorption. In fact, it is not even fair to describe it as tiredness.

It is an exhaustion that prevents us from going out and doing what we want to do, let alone what others want to do.

I have lost friends because of my fatigue. Sometimes on a bad day I can go to bed at 9 p.m. and not wake until 3:30 p.m., and even then I still only feel like I have had 30 minutes restless sleep.

I want to go out and be with my partner, my family and friends, but most of the time it takes all my energy just to get off the sofa or out of bed.

4. Frequent, non-frequent or painful toilet trips.

As someone who has been diagnosed with irritable bowel syndrome since I was a teenager, and most recently diagnosed as a celiac, toilet trips are a problem for me. Sometimes it can take me ages, other times not so much.

This is very embarrassing, especially in situations where I am not in the comfort of my own home.

I remember a time when I was about 18 or 19 years old. I had gone out to a nightclub with friends. I was having a great time, when all of a sudden that familiar feeling in my stomach reared its ugly head. The cramping and pain. I needed to go but the queue for the girls bathroom was absolutely chocka.

“What do I do?” I kept thinking to myself. I stood in the queue and just prayed silently in my head for the queue to go down quickly. Fortunately it did, and I got in the cubicle and did my “business.” However, there were at least 15 girls still in the bathroom checking their hair and makeup. I had been in the cubicle quite a while, and was in pain. Then, one girl banged and kicked my cubicle door, and very loudly and said, “WTF you doing in there, have you died?” and laughed. I said nothing. I didn’t want anyone to know it was me in there, so I lifted my feet off the floor and balanced them on the door, so that if anyone looked under the door they would think the door had just locked from the inside and no one was actually in there.

I was absolutely mortified because I knew that I was still going to be a while. If they had wanted to, the girls could have gone in to the neighboring cubicles and peered over in to mine.

I kept still, and didn’t make a sound. I was so concerned that someone might hear me breathe and then they would know I was in there. I wanted to fall down the toilet and vanish. Eventually the girls did leave, and I came out, in floods of tears because of the embarrassment. I didn’t even go back to find my friends. I walked straight out of the club and went home alone. My night had been spoiled. I promised myself I would never let that happen again.

5. Frequent, inconvenient and most of the time, pointless hospital or doctors visits.

This is a huge bug bear of mine. I can not choose when we are sick. When I am going to catch a cold, or a general bug, that completely shuts my immune systems down and makes me really ill. I understand that this is really inconvenient for my employer, but I can not help it.

I will have time off work.

I wish I could schedule myself around “normal life,” but it does not work like that. Sometimes it happens when I am out having fun and we have to go home, or go to hospital. I can only apologize.

I know, hand on heart, how annoying it can be for some. However, think how bad I feel being the person that keeps going to hospital appointments and being told:

“You’re fine.”

“Just take some antibiotics and go home.”

“Keep your fluids up.”

I am the patient, and I know when I do not feel right.

Many of us spoonies lost faith in the medical profession a long time. Of all the spoonies I have spoken to, it has taken them ages to get a diagnosis at all, and even when we are being monitored, and have researched what our optimum blood levels should be, the doctors still tell many of us that we are fine.

My hyperthyroidism was discovered purely by accident. I had been told from a young age that I had a virus in my blood but I was going to have to learn to live with it.

Then I was told I was borderline low thyroid. When I moved doctors, the nurse at a routine exam checked my pulse and asked, “Have you run here?”I laughed. I had driven and had been sat in the waiting room for 20 minutes. She repeated the test and my pulse rate went up. They referred me for a blood test and called me into the doctor the same day. I had hyperthyroidism and Graves’ disease, and my levels were sky high. Had it not found when it was, it could have killed me.

Maybe if the medical profession had monitored me more closely when I was younger, I would not have ended up as ill as I was.

I was also diagnosed with irritable bowel syndrome from about 15 years old. I was given muscle relaxants for the pain and constipation, and told that nothing else could be done.

Hang on a minute, though. This month, I have just been diagnosed with celiac disease. Again, this is sounding like a familiar story. Maybe if the medical profession once again had monitored by stomachaches, and multiple trips to the hospital in agonizing pain, I would have been diagnosed with celiac sooner and not spent most of my life with terrible stomach pain.

If my celiac had been diagnosed sooner, it may have prevented my thyroid from malfunctioning in the first place, and I might not have had to have had it removed, as there is a strong link between thyroid and gastrointestinal problems.

It might also have meant that my gallbladder might not have started producing gallstones, if my gut was working properly and I was not eating gluten. I might not have needed to have my gallbladder removed. I am due to have a gut biopsy soon, so hopefully there has been no lasting damage caused by celiac not being found sooner.

6. We spoonies are still human beings, and the people that you knew before we got sick.

Do not forget us.

Support us.

Keep asking us out. We may not come, but still keep asking. One day we might!

If you do not understand something, ask us! Sometimes we do not know how to explain it very well ourselves, but we will try.

We are still the people, the family, the daughters, sons, friends and partners that you love. We just have an underlying problem that we can’t get rid of.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Ingram Publishing

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How 'Mobility Fluidity' Makes My Vacations With Chronic Illness Fun Again

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I want to invent a new phrase which I haven’t yet seen. It is borrowed from other social science phrases like “gender fluidity.”

The term is: mobility fluidity.

I’ve seen others talk about this… “I can walk but sometimes I need a wheelchair.”

My goal is to empower anyone who limits their vacation plans, their local tourism or their life because it either hasn’t occurred to them to use a wheelchair, or they are nervous about it or, worse still, they don’t feel “worthy”– they aren’t “that bad.”

Let’s set the record straight.

I can walk. I do walk. My journey towards owning a wheelchair came by me naturally.

The first use was at our annual Minnesota State Fair. It was easy. I rented an electric scooter and had a surgery sandal on each foot from foot surgeries. “Visible” disability helped me feel more comfortable and less “fraud” like.

But let me tell you… I don’t know if I’ve ever enjoyed the fair so much. I was easily able to go from one end to the other. I even got to the second floor of the big grandstand stadium! I never had to consider “how much pain or dizziness or misery is it worth” to go to any particular spot.

Next up was a cross country trip for Thanksgiving. We decided to meet up with my in-laws in Atlanta to show the kids where their dad spent his early childhood. I was still dealing with foot surgery difficulties (likely EDS acting up from the surgeries) so I knew to rent a wheelchair if I wanted to actually enjoy the city.

Mind you, this was my first hand-pushed wheelchair experience. There were some screams (me), a lot of stress watching curbs, walls, doorways… But it was great! So, so, great. I even went to the Coke Museum, which if you ever want to go, is very gracious with ADA accommodations.

That wheelchair rental was for 30 days. We ended up wanting to buy one for my husbands 40th birthday in Chicago. You’ll quickly learn renting is more expensive then owning if you go the basic wheelchair route.

I love Chicago but the year prior, for my 40th, over half of it was spent in serious pain. The only time I was “less in pain” was sitting to eat, though eating creates its own pain (gastroparesis.)

Like most of us with invisible disabilities, in my case hyperPOTS, vasovagal syncope, scoliosis, viral asthma, gastroparesis, arrhythmia, and likely mast cell activation syndrome and Ehlers-Dahlos syndrome (those two are on waiting lists for experts), I only posted the fun times on that trip to my social media friends and family.

Nobody cares that I was assessing every step, every possible tourism destination, by a pain-o-meter.

Nobody sees the frantic search for a bench when you just can’t keep going.

Nobody sees the sweat, the wooshing brain, the dizziness, and the joints screaming for quiet.

And for sure nobody sees the total and complete shut down that happens. For me it lasts two to two-and-a-half weeks. I barely function and lately I fight debilitating depressive anxious mental goo while in that dark fog-like recovery period. I’m learning to ignore the darkness, but it is not enjoyable at all.

Fast forward. We’re now back to a successful trip to Atlanta with a wheelchair and my husband’s birthday coming up. My husband and I went to a local medical supply company and found a fantastic wheelchair for about $300.

Our next Chicago trip? Night and day difference. I thoroughly enjoyed the city, the streets, the Planetarium (except scraping my fingers in a tight corner! Ouch.)

My husband? He was beyond liberated to walk, walk, walk to his little heart’s content. He was able to go anywhere without this constant awareness of my pain-o-meter.

The side benefit of wheelchair use when you’re not elderly? My husband said he got tons of sympathy looks, especially from women. We joke his sexiness rating went way up because he was helping out his “poor, helpless” wife. We died laughing rather than choosing to be offended at the inspiration porn nature of it all.

We even managed to do all the public transit with only one whoops non-ADA station.

The single bad moment was a woman at a restaurant walking right past us when we were clearly in line. My husband managed to quickly move my wheelchair and we assertively reclaimed our spot with the host.

Here’s my trick: I am not naturally one to look at people. Maybe it’s because I live in Minnesota and eye contact is “too aggressive.” Or maybe it’s because I’m not the most observant soul (that’s putting it mildly). So did I get stared at? Maybe. Did people think all sorts of things when I walked to crowded restaurant tables? Maybe.

Did I really care?

No.

Finally, I found my liberation. At least for big adventures.

My hope is this story encourages you to consider a wheelchair for a big adventure. Ignore the world, and take back your life.

You’re worth it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Wavebreak Media.

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Why I Don't Curse My Illness

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Living with a chronic illness can be hard at times; it can be debilitating and dispiriting. It’s something I have talked about in many of my posts, but something I really touched upon in “When Chronic Illness Gets You Down.”

Despite these struggles, I try not to let it get to me and, though it might be hard sometimes, I never resent my illness, or the struggles that come with it. Keep reading to find out why.

Living with a chronic illness can be hard sometimes but heres why I dont and will not resent it

As I write this post, I know I have it easier than some. I talk to a lot of other people struggling with these types of illnesses from all over the world and, when I listen to some of their stories, I find myself thinking how lucky I am. Lucky that my illness was diagnosed when it was, before it progressed too far to do anything. I find myself grateful that, for the most part, I am still able to lead a normal life, still able to do the things I love and still able to choose how I live. I only wish my spoonie friends could be in the same position.

That being said, it’s not all been plain-sailing. Recently, I finished university and on Thursday, I received my “confirmation of award classification.” Now, before I reveal what that classification is, let me tell you about my university experience.

At the beginning of first year, I packed up and moved to York, ready to start my accounting and finance degree. Besides a few days here and there, my attendance was pretty spectacular and no one was any the wiser to my daily suffering (other than those I chose to tell). I came through first year with a first.

 

By the time I got to the second semester of second year, I was absent, at least once a week, and morning sessions were becoming increasingly harder to get to – and not for the same reasons as other students. I finished my second year on a high 2:1, which is still pretty fantastic with the time I had off.

Now, I come to my third and final year. In my first semester, I made it into university for a total of two whole weeks – out of 12! The rest of the time I mostly spent in bed, barely able to move. I continued to keep up with my classes as best as I could from home and I finished that semester with a 2:2. Over Christmas, I moved back home and commuted the two-hour journey by train. This was the best decision I made, as I only missed two/three weeks of the semester. However, I still struggled to keep up with deadlines because they were all so close together.

I will let you in on a little secret: I am a perfectionist, and a determined and stubborn one at that. I went to university knowing what I wanted to come out with. The problem? I didn’t account for the effect my chronic illness would have on that experience. The further I got through university, the more my grades were slipping and the less I was enjoying it, the more I just wanted to quit. I spent the best part of the last year and half wanting to drop out, every day. Did I? No, my stubborn self made sure I stuck at it, even while my body was screaming no. Guess what? On Thursday, when I thought I would be graduating a step behind everyone else, I was confirmed a 2:1 Bachelor’s degree in Accounting and Finance. I freaking did it.

Why did I just tell you all of that? Because it shows that even when you think you can’t do something, there’s always something stronger inside of you telling you that you can. Listen to it.

So…why don’t I resent my illness? Because despite all the doctor appointments, the hospital appointments, the driving back and forth to physio, the missed time from school and university, the missing out of friends’ plans, the endless amounts of pills and painkillers, the mental, emotional and physical effects of it all: it’s made me who I am today.

The woman I am today is strong, because of what this illness has put me through. The woman I am today is trusting, because of the reliance on other people to help me through my rough times. The woman I am today is caring and compassionate, because I know the effects of these types of illnesses on both the person struggling, and those around them.

Most of all, my illness has made me who I am today, and I’m proud to be that woman.

You should be proud to be you too.

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26 'Hacks' That Can Make Cleaning Easier If You Have a Chronic Illness

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When you have a chronic illness, seemingly mundane tasks like washing the dishes or doing a load of laundry can be difficult and exhausting. Doing more thorough household chores such as vacuuming, mopping or scrubbing counters can easily exacerbate chronic pain and fatigue. On bad flare days, cleaning may not be possible at all.

Therefore, many of those with chronic illness have developed certain tricks or found accommodations to help maintain their home while they battle various symptoms. We asked our Mighty community to share some of their “hacks” for making cleaning with a chronic illness easier. Perhaps the following can be of help to you as well.

 

Here’s what the community shared with us:

1. “Cleaning in sections! I don’t stress about the whole picture at once anymore. I’ll work on laundry one day, maybe the bathroom another day, organizing one space at a time, etc. It’s much easier to get a small area/specific chore done and it still feels like you accomplished something – because you did!”

2. “Have extra underwear. Lots. Doing laundry only every six to eight weeks. $25 and two-plus hours at a laundromat instead of multiple trips. Priceless.”

3. “It takes a lot of energy to repeatedly bend down and pick things up off of the floor for us with chronic illnesses. The best thing I have found is to use one of those long reacher/grabber things. It conserves a lot of energy for me.”

4. “Some things I do to make things easier are to use disposable plates, silverware and aluminum pans to cook, use a sponge mop to clean my shower/tub to help with my back and alternate between activities that exert a lot of energy and things I can do sitting down.”

5. “Baby wipes! Paraben-free ones. They are amazing. I use them to clean sinks, work surfaces, clothes – all to delay having to do a proper, long, tiring clean or a washing load.”

6. “I ‘mop walk.’ I put small towels under my feet and spray cleaner from a bottle as I shuffle around the house cleaning the floors!”

7. “I have a Roomba, got it for Christmas. It’s fabulous! I know that brand is expensive, but I’ve seen cheaper versions from other brands at Target. It’s amazing how much less exhausting it is not lugging that big ol’ vacuum around, and how much better I feel with clean floors.”

8. “I wear painters’ masks so I don’t aggravate my dust and mold allergies.”

9. “Products on infomercials are actually made for people with disabilities. So, I scope those out a lot and get the ones I think will make my life easier. I figure if they can do the job 80 percent as well as I could and save me energy without causing a pain flare, it will be worth it.”

10. “Hire someone! I know this isn’t an option for everyone, but it’s been such a relief for me. Even if I can’t have them do everything, it takes a lot off my plate.”

11. “I have my children do it! Seriously, I have given up on having a pristine house. I have baskets and bins all over the house that things get chucked into. I use disposable wipes for cleaning the bathroom and kitchen. I nag my family to put things back.”

12. “I took a minimalist approach. I got rid of a lot of stuff I just didn’t use and it made cleaning and laundry a lot easier. I know minimalism isn’t for everyone but it did help me.”

13. “When tidying, place things ‘in the direction’ of where they need to end up. Only travel when there’s lots of stuff heading that way.”

 

14. “When I’m not feeling great but have things that need to get done, I do ‘commercial break’ cleaning. I will be watching TV and every commercial break I get up and do something until the show comes back on.”

15. “I use a mop to scrub the bath tub and shower. It saves me having to bend too much to scrub.”

16. “Decided that the level of clean I used to feel was crucial is not necessary now. I have relaxed my standards.”

17. “Cleaning in stages really helps! For example: clean both bathroom mirrors and counters today, do the toilets and floors tomorrow. There is no shame in splitting up rooms or tasks to keep from spending all your spoons.”

18. “Vinegar and baking soda. I let it soak for 30 minuets and any mess just wipes away with ease. No hard scrubbing.”

19. “My hack for clearing the mess out of each room is to hang a bunch of used/reusable shopping bags over my wrist, or the door handle for whichever room I’m in. Then designate each bag for a different destination. Like that dirty glass from my nightstand? Goes in the ‘kitchen’ bag. Shoes? Living room bag. Etc. That way, I don’t have to walk back and forth all over the house 100 times just to clean one room. When I’m finished, I just distribute the bags to each room once. It also works to put the bags in a laundry basket, then scoot the basket around the house like a delivery truck.”

20. “I ask my mom over to help me by ‘distracting’ me from the pain so I get more done since I am entertained. As a bonus, she helps because… well, she’s a mom. Also, blast music or comedy skits in the background. Again, distraction.”

21. “I have a robo-vacuum and one of those grabber arm things. I also use the Unfuck Your Habitat app because it’s geared towards people with chronic illness, mental illness and disability.”

22. “When I am tackling the kids’ rooms/toys, I sweep their toys into a pile so I can sit down and sort them all at once (usually into buckets to make putting them away easier) rather then walking around picking them up individually.”

23. “I have a service pup pick things up for me. Would never get anything done without him.”

24. “I use cleaners that can be sprayed and left to do most of the work themselves then just wiped off. If I need to do serious scrubbing, I use a scrub brush or a sponge on a long handle so that I can hold them without my hands cramping.”

25. “Take breaks! Work for a little bit then take a small break. Work then break. It’s efficient and helps get more things done in the long run.”

26. “Honestly my biggest tip/hack for anyone who is chronically ill is to be gentle with yourself. If the washing doesn’t get done today it’s no big deal. If you forgot to do something that needed to be done it’s not the end of the world. Write a list so you don’t forget next time. Our bodies are hard enough on us without ourselves being even harder. Be kind, be patient, be gentle. Treat yourself how you would treat another chronically ill person.”

What’s a “hack” you use to making cleaning with a chronic illness easier? Let us know in the comments below!

26 'Hacks' That Can Make Cleaning Easier If You Have a Chronic Illness
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10 Spoons: A Poem About Living With Chronic Illness

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10 Spoons

I know you struggle to understand what my life has now become,
How this happy soul who was full of life has slowly come undone,
I’ve tried my very hardest to make you understand,
How our life we have together is not what we had planned,
So let me try just one last time to make you try and see,
That every day’s a struggle just trying to be me.
Imagine you start every day with 10 spoons to face the day,
For every physical activity you throw at least one spoon away.
So when I wake each morning after very little sleep,
The pain again it rises and through my body it will seep.
I’ll raise myself up out of bed and get up to face the day,
But that comes at a price, a spoon in fact, so I throw a spoon away.
Now getting dressed may seem a breeze for those who do not know,
The pain of every twist and bend all done so painfully slow.
Once done I hear the children call, it’s time to start the day,
Again I lose another spoon, just getting dressed took one away.
Off downstairs I take myself to tend and feed the kids,
Breakfast, book bags, the trip to school, all jobs my body forbids.
Once done I’m left exhausted, two more spoons just now have went,
Do you see now how so quickly those four spoons have been spent?
Kids at school it’s time to do the housework for the day,
I’ll do the washing and the ironing, another spoon I’ll have to pay.
Then there’s cleaning and the meals to cook for when you all return,
That’s two more spoons I’m left without, are you starting now to learn?
I’ll collect the children, bring them home and organize their tea,
Help with homework and then bath them, that’s three less spoons for me.
The kids in bed it’s time once more to tidy round and clean,
To prepare for yet another day, every day the same routine.
But wait! There are no spoons left! And my body screams with pain,
The tiredness now consumes me and a fog creeps in my brain.
I’ve nothing left, no more to give, the spoons have all run dry.
I’ve jobs to do, I’ve things to sort but all I do is sit and cry.
This is my life, every single day, the only difference being,
The amount of spoons I start with, there’s no knowing or guaranteeing.
Please tell me now you understand a little better than before,
How every day I’m handed spoons but am always needing more.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Gokcemim.

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How Chronic Illness Has Affected My Sense of Self

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There is a side effect of my condition that has taken me by surprise. I have adjusted to the uncertainty, the anxiety that surrounds knowing something is wrong with me, but not knowing what. I’ve learned to monitor my energy levels, manage my stomach issues, to smile politely and hold back the tears as specialist after specialist tells me they’re sorry, but they don’t know what’s wrong with me. That this all-encompassing illness that has affected every aspect of my life is still unlabelled is difficult, but what has shaken me is how strongly it has affected my sense of self.

 

I can no longer work, socializing is rare and anything I would like to do is surrounded by a caveat of “will I be physically able to do this?” – the answer to which is often no. Sometimes I feel hollow, a makeshift person stitched together by physical symptoms and controlled by circumstances, not a creative individual defined by hopes and dreams, passions and hobbies.

I am not my illness, but I am not the same person I was before I got sick either. The past few years have taught me a lot about myself, both positive and negative. While I stay ever optimistic that they will eventually figure out what’s wrong with me, part of me wonders what will happen when that day comes. My hopes for the future are so centered on getting better that it’s impossible to see beyond that. What do I want to do with my life? Where do I see myself in five years? 10 years? I know how suddenly you can be blindsided by things outside of your control, and how things you take for granted – working, socializing, hobbies, can so easily be taken away from you.

Having lost several years to this condition, I’m torn between a desperate desire to hit the ground running, a determination to not let a minute go to waste, to even now be working towards my dreams as much as I can and an empty, gnawing panic – I don’t know what they are. I sometimes feel as though I don’t know who I am anymore. For so long, everything has revolved around my health – so much so that I worry I’ve lost parts of myself along the way.

I read an article in last week’s The Sunday Times Style Magazine by Chloe Fox about the difficulty of post-cancer recovery, in which she discussed the importance of “the acknowledgement that this part of the journey is hard – harder in many ways, than the illness itself.” She quotes Dana Jennings when discussing a similar topic, remarking that “this isn’t about sadness and melancholy. It is more profound than that. Broadly, I have a keen sense of being oppressed, as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.”

This article so beautifully put my feelings into words that I felt as though I’d been punched in the stomach. I had been struggling with this sensation that I couldn’t verbalize for a long time now – something that, as a writer, I found extremely disheartening and confusing. I feel that thick fog surrounding me. I feel as though my core, my dreams, my passions and creativity are lost in it and it is too dense to see through. I grope blindly in the dark, hoping to blunder my way through it. I fear that I have spent so long learning to check myself to the limitations of my condition that I have forgotten how to dream outside of them.

I know that firstly, I need to be diagnosed, and secondly, treated, before I worry about post-recovery plans. I need to accept there may never be a post-recovery. Recovered or not, I still have this urge to reclaim myself. I want to do whatever I can now, whether it is just small steps or large ones, to work towards my dreams, whatever they may be. My illness does not define me, but in order for me to figure out who I am, I must navigate that fog of fear, uncertainty and doubt.

I have lost many things to this condition, but I refuse to lose myself.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via artlazareva.

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