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The Reality of Chronic Fatigue and Exhaustion

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What exhaustion and fatigue are not:

1. Laziness. It’s not simply not “wanting” to do something or not being bothered.

2. A temporary state you can simply overcome with a little positive thinking or an energy drink.

3. Cured by sleep. Being “sleep tired” and being exhausted are not mutually exclusive but they’re not the same thing. Getting some Zzzs does not equal a body that’s got energy.

4. An excuse. It’s a reason, not an excuse, for why we don’t do certain things, why we may bail on a social occasion, why we don’t have “plans” for the weekend or evening.

You can be so incredibly exhausted, yet feel restless. It can be incredibly frustrating to feel shattered or feel like your brain is cotton candy when you want to do something useful/fun/productive but simply don’t seem to be able to manage it. You can spend a whole day not exactly feeling bored, but finding small things to do or just being totally zoned out, then be unable to tell people what it is you’ve been up to all day. Your day has been spent doing something, but you can’t put your finger on what. The question of “What have you been up to?” starts to feel almost accusatory and impossible to answer.

What exhaustion and fatigue really are:

1. The opposite of glamorous. Sometimes getting out of bed, getting in the shower and taking care of yourself can be monumental mountains to climb. Other days will consist of greasy hair, pasty skin, negative moods, bad complexion, pajamas and bags under your eyes big enough to fit a baby panda.

2. A vicious cycle. When you push yourself and “work through it,” you often pay for it afterwards. Before I left on sick leave for surgery, I spent years working full-time and giving it 110 percent. My evenings were shot, my weekends non-existent; my body was always on catch-up, forever burnt out from using up what little was there for work.

3. Frustrating. Wanting to do more, to be more, when sometimes it’s simply not manageable. Restless yet exhausted, motivated yet defeated.

4. Isolating. Whether this is from your family, friends, work or a social life, exhaustion and fatigue can get in the way of plans and even affect your desire to do the things you would have otherwise wanted to do. If you find others don’t understand or appreciate your reasons for sometimes saying no to going out or feeling “unsociable” and needing time alone, it can be hurtful and leave you feeling lonely.

5. A spiral of feeling judged. Everyone gets tired, everyone gets exhausted from time to time. But to have it chronically, to deal on a daily basis with an invisible illness or fatigue is something else, something you perhaps only really understand fully if you’ve experienced it. Suddenly, being unwell and utterly shattered is like a competition, and it can feel as though we are judged and looked upon with skepticism.

Those, like myself, who experience in-your-bones exhaustion, may be good at hiding it from the outside world. Putting on a brave face, saving up the energy they have to paint a picture of wellness when they’re outside their home, posting statuses or photos on social media. What is portrayed is often not the reality. People create their own story to tell the world.

That said, there can be good times too, moments of enjoyment if we seek them, minutes or hours or days of joy and appreciation when we are gentle with ourselves and are able to better manage the challenges we face. Choose your battles wisely and use the energy you do have on the meaningful things in life.

Follow this journey on InvisiblyMe.

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16 Reasons a Person With Chronic Illness May Cancel Plans

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Chronic illnesses aren’t always predictable, and sometimes that means the plans you made with friends need to be canceled. A flare-up or loss of energy can mean that movie date you planned just isn’t possible anymore, even if you really wanted to go.

People don’t always understand how an illness can make it difficult to go out and socialize, so we asked our Mighty community with chronic illness to share some of the reasons why they might need to cancel plans. Of course, a person with chronic illness may cancel plans for other reasons that aren’t related to their health. But if you’re reading this because you have a friend with chronic illness, the responses below may offer some insight into how their health might affect if they can hang out like you planned. Be understanding and supportive when they can’t make it.

Here’s what the community told us:

1. “I’m feeling beyond exhausted — not the usual exhaustion, but the one that feels like you have have the flu combined with being weighted down by a ton of bricks! The thought of having to socialize when you’re tired and in severe pain makes me angry and frustrated.”

2. “I have endometriosis so I think pain is an obvious reason for canceling (for the people in my life who are aware, that is), but anxiety really is what gets the best of me. I get so worried that something will go wrong while I’m with company (heavy bleeding, immense pain that requires medical treatment, etc.). I also get anxious that I will be in too much pain to be good company, so I worry I will upset those I am supposed to be spending time with and cancel to spare them.”

3. “On weekdays I have no energy. The fatigue is brutal. Couple that with joint pain, swelling and lack of sleep. Then pushing and pep-talking myself to get out of bed, go through my morning ritual, commute on three different freeways, work a full eight-plus hour day, drive back on three different freeways, and finally make it to my driveway — I only have energy to get out my car one time and walk into the house one time. I have nothing left. I cant bring myself to leave or get ready.”

4. “People don’t seem to understand that just because I was fine yesterday or in the morning doesn’t mean I can’t get hit with it all in a matter of seconds. I could have so much energy and go make a coffee and have a shower and then need to lay down for the rest of the day.”

5. “I might have to cancel plans because a fibro flare is in full force with no end in sight. I also would have to cancel plans due to feeling completely exhausted. Sometimes even the thought of having to get dressed to go out causes pain and exhaustion.”

6. “I often have to cancel plans due to a postural orthostatic tachycardia syndrome and orthostatic hypertension flare. It’s so hard to pretend you’re OK when you have a chronic illness, but it becomes impossible when your illnesses flare. It’s so embarrassing and painful to pass out/faint in general, but it’s mortifying to be in public and pass out/faint every few minutes.”

7. “I’m unable to get there. Even if I am feeling good that day, I don’t drive, I can’t handle long public transport rides, and ride shares aren’t always affordable. If the travel is going to take too much out of me, I can’t do it. Getting there is really half the battle sometimes.”

8. “I didn’t get enough hours of rest to bank. Not to mention there’s things going on for several days after and energy is obsolete. Memory is not there. And I can’t physically or emotionally keep up!”

9. “Sometimes the hardest thing is the talking. ‘So what have you been up to lately?’ And you just sit there and think about when was the last time you saw them and besides the damn illness there hasn’t been anything at all. But you’re trying and wanting to socialize so bad and you don’t want to ruin the atmosphere… I’m sick of complaining but I don’t want to lie either. And sometimes it hurts so much to hear what they have achieved while you’re struggling so much to even take a shower.”

10. “I’m too tired to be positive. There are some friends I only like to see on my good days. Also, just getting dressed, going out, sitting and chatting can be really exhausting on bad days.”

11. “If it is someone I haven’t seen in a while, I might cancel plans with them because I’m ashamed of the way some of my medicines have changed my appearance.”

12. “I have chronic migraines. Trying to pay attention, carry on a conversation, or just interact with people is too hard and too stressful. I fake it and smile a lot already, but I’ve learned that self-care is of utmost important, especially as I get older. That means either canceling plans or simply not making them.”

13. “I get excited the days coming up to plans. And use all my energy before the day even arrives. I can never sleep the night before plans. Then on the day I can’t go because I wasted all my energy.”

14. “Even though I’m not in pain at the moment, I know by pushing myself, I’ll be paying for it later (in the form of extreme pain at the end of the day).”

15. “I start to worry if my walker would alarm people since I’m still a college student. I start to worry if people will be smoking or be wearing perfume/cologne that triggers my chronic allergies. I worry if we’re going to be eating because I only trust myself to eat chicken outside of the house — but what happens when they want to go to a BBQ place? Or a place the sells mostly beef? My gastroparesis would have a fit if I indulged in that kind of food. Last but not least there’s the feeling of being left behind because I am in my walker and I’m hunched over and can’t walk fast.”

16. “Doctors appointments! They come before fun personal outings, and last-minute appointments or ones that run too late can make it necessary to cancel other plans! And if you had plans to do something after your appointment, the exhaustion or hard emotions of an appointment can be very overwhelming. We can only handle so much in a day and it may be time to go home and take a nap after an appointment!”

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Top view image of woman hands on her bed using a laptop while drinking tea and petting a cat. with text 16 ways to get through days when it feels like your illness is winning

16 Ways to Get Through Days When It Feels Like Your Illness Is 'Winning'

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For many people living with chronic illnesses, there are some days when it just feels like your illness is “winning.” Maybe your pain is at a higher level than usual, or you feel stuck in a flare-up. On those days, your favorite self-care strategies may help remind you it’s OK to listen to your body’s needs and how strong you are for getting through these difficult times.

We asked our Mighty community to share what they do on the tough days when it feels like their illness is “winning.” From resting with “guilty pleasure” TV to doing something kind for someone else, this is what real people with chronic illness do cope during the hardest moments.

Here’s what the community told us:

1. “I try to give myself permission to respect the message my body is communicating to me and take a break from responsibilities (university work, household chores, chasing my toddler around). Sometimes the guilt is worse than the sickness.”

2. “I rest and try my best to relax. My heating pad is my best friend, and sometimes spending time with/talking to my family and boyfriend helps distract me. More than anything, I remind myself to ‘just breathe’ and hope that tomorrow will be better.”

3. “I talk about it with my family, whom I’m incredibly close with, and meditate (if I can). I forgive myself for having horrible days! I’m known for kicking myself in the teeth when I’m down because I feel like a burden and a failure. My family will squash out those thoughts with unconditional love and understanding. I count myself lucky to have the support I do.”

4. “I rest and binge-watch trashy TV, and try my hardest to remind myself I’m not lazy, I need the rest and that if I don’t rest and try to push through it, I’ll be out for much longer than if I had just rested.”

5. “I frequently remind myself, ‘You’ve gotten through every other day up until this point, you will make it through today too!’ Then I allow myself ‘creature comforts.’ I wear gloves inside without worrying what others think or say, I drink my coffee all day long, I take naps if I can and relax as much as possible.”

6. “I have a special (super easy) recipe for a paleo hot chocolate. I love it, it’s a comfort food, and it doesn’t contain anything that would flare me up even more, which is a hard combo to find! I reserve making it for days I’m really struggling and getting depressed over all I’m missing out on, to remind me there are still good things I can create and enjoy!”

7. “If the pain is not ‘off-the-charts,’ then I go downstairs to paint in my studio. I put relaxing music on and try to get lost in the process.”

8. “I do something kind for someone else. Taking a few minutes to get out of my self-pitying mindset and focusing on kindness and goodness helps reset my brain to a more positive place. Things like writing a note of encouragement to a friend, or buying a latte for the person in line behind me, or commenting something nice on social media… my illness will not win, love always wins.”

9. “I play on my Nintendo 3DS — Animal Crossing most of the time. When I’m too sick to accomplish anything, playing the game and doing the game tasks makes me feel a tad more useful. Even if it’s just a game.”

10. “I give my self small tasks to do, like getting out of bed, getting dressed, etc., and will generally reward myself with tea and maybe a cake on the weekends I spend in bed or not doing much at all.”

11. “When it feels like my illness is winning, I listen to instrumental music and watch things that make me laugh like the YouTubers called Game Grumps, or I watch anime on my phone.”

12. “Today I’m having significant hip pain… I’ve been wanting to get my hair cut so I treated myself! I also bought a small candy treat. Now I’m exhausted and am topping it off with snuggling with my kitty and a nap!”

13. “I let myself have a moment of complete failure, I cry, I may yell, but then I pick myself up and tell myself over and over that I just have to get through today. Just one more day.”

14. “I binge-watch the TV show ‘Friends’ all over again. And either read my book out loud or draw. I like to do charcoal cause getting messy with artwork is like letting my chaos get everywhere without a care.”

15. “Guided meditations. They help me refocus my energy to push through the pain. YouTube has a lot of options.”

16. “Dance. Even when it hurts and the last thing I want to do is move, I dance. I dance with my full body or arms or just head. Getting energy from music is incredibly powerful.”


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Doing the Laundry When You Have Chronic Fatigue

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“I’ve been sitting here for an hour, trying to summon up enough energy to go downstairs and load the washing machine. Before that, I had taken a nap, but now I need a nap to recover from the first nap.

If I were Sleeping Beauty and Prince Charming came along to place a delicate kiss upon my lips, thus waking me from a 100 years of slumber, I would high five his face with my fist and ask why he felt the need to wake me. Will this tiredness never cease?

OK, I’m gonna go and load the washing… right after I take a nap…”

This was from a  Facebook status that I had posted earlier on in the day. Ten minutes after taking that nap, I eventually begun the process of loading the washing machine… but not before pushing the laptop aside and taking yet another nap. After a bit of self berating which included the words, “Get your large derriere off the bed,” I decided to take down and fold the clothes that had been drying on the rack in my room. Yes, I do have an outside washing line, but the upper arm strength needed to reach up and peg bits of materials onto a line takes athletic skill and great prowess. It also means a walk through a garden so overgrown, I fear that I may be attacked by poisonous Amazonian spiders bigger than my face, or trip over a well-concealed dead body. And so I sat gently on the side of my bed and prepared to fold laundry like a boss. And I did… on my back… with my eyes closed…without said laundry being folded.

Thirty minutes had now elapsed and I awoke surrounded by the pink blossom scent of my child’s underpants. Like an origami amateur, I quickly folded the clothes into shapes that could not be defined, gathered up the dirty laundry and proceeded to head downstairs. The journey downstairs felt more like a trek across the Gobi dessert, and instead of walking down 13 steps, I was battling sand storms and sedimentary dunes. Reaching my destination, and by destination, I mean chair, I threw the clothes haphazardly upon it, and then sat on top of the mountain of washables.

Twenty minutes idly passed by. Twenty minutes that could have been utilized by doing something more construction or more productive, but instead, I spent the time dreaming about a man watching me from the not-so-far reaching corners of my attic. And that’s when I spied cheese… lots of cheese. It was everywhere. On the glass table, the DVD shelf, the CD cabinet, the floor and sacrilegiously and almost criminally, on my album covers. It appears that unbeknown to me, my child had gotten himself a side job as a rat catcher. And so I scrapped, and wiped and rued the day he was born, before assembling the Hoover and commencing operation “cheese-grate.”

Now I really did need a nap. A fire breathing dragon had scorched my back or at least that’s what it felt. The fiery tendrils of flames soon licked along my hips and down my thighs, and my ankles and feet had become so swollen, they begun to meld as one. I had cankles. This time the nap only lasted for 10 minutes, but the pain and swelling in my feet made it virtually impossible to walk. My back still burned and I’m sure I felt a couple of already loose discs, slip further down by spine. But on I pushed to the ultimate goal. The kitchen.

At this point, I may have cried a little, just a sniffle, but my tears were soon abated when I saw where the Battle Of Waterloo had really taken place… my kitchen. It was a battlefield. I immediately set about writing my child’s last will and testimony, because a murder was going to take place once he arrived home from school.

Placing the washing on a nearby table, I cleaned to the best of my ability, which is not saying very much. By now I was hunched over like a wizened old crone, the pain no longer allowing me to stand upright. I gave up on the dishes though. To do that would mean balancing on one elbow so that I didn’t collapse, while attempting to wash the dishes with the other.

Finally, the end was in sight. I grabbed the clothes and wincing as I bent down, placed them inside the washing machine, jiggled with the settings and pushed “on.” Mission accomplished. It was only when I had reached the confines of my bed, exhausted beyond belief, and after literally crawling up the stairs because of the immense pain, that I realized I had put the clothes on the wrong cycle. “Never mind,” I thought, “I’ll go and reset it in a minute.” At which point, I promptly took a nap.

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20 Things People Don't Realize You're Doing Because of Your Invisible Illness

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Having an invisible illness means outsiders may not notice many of the symptoms and/or side effects of your illness. They may also be oblivious to the things you do each day to cope. What looks to others like relaxing on a chair may actually be your way of lessening your pain. Wearing sunglasses indoors may seem like a fashion statement, when really it’s a necessary migraine prevention tool.

We asked our Mighty community to share the things they do that people don’t realize are because of their invisible illnesses. If people take a closer look, they’ll see the adjustments and strategies you use to cope with your illness every single day.

Here’s what the community told us:

1. “Canceling plans or avoiding making plans with friends. It’s not that I don’t want to see them, it’s that I don’t know if I’m able to even get myself dressed that day. I feel so bad, and I may seem flaky, but it’s not me, it’s my illness.”

2. “I don’t eat when we get invited out to dinner or at parties. Most food isn’t Renal diet friendly and not prepared clean enough for my immunocompromised immune system. I’m not trying to be rude, but I can’t risk my health to make a host feel good about themselves.”

3. “I often have brain fog due to Ehlers-Danlos syndrome. When the brain fog hits it’s like a tidal wave. I often will mess up the simplest tasks. I once destroyed a decorative burner cover by forgetting to remove it from the burner before trying to cook rice.”

4. “I wear sunglasses indoors because my sensitivity to light is so bad that it causes severe pain and nausea. Even with sunglasses on outdoors, if I don’t have a hat, I need to shield my eyes with my hand like I’m saluting someone. People tend to make sarcastic comments about these things without realizing I’m doing this to minimize my pain.”

5. “I show up early to church to be able to sit in the comfortable chairs up front due to my chronic back injury and my heart-related complications. I often have to sit through most of the worship service.”

6. “At work (the days I can actually make it in) I put on my headphones and tune out the world. Whether I’m listening to music or getting lost in a book, it helps me focus on something other than the pain.”

7. “Not letting people come visit me at my house or just stop by to drop stuff off because the inside of my house is a disaster. I can’t keep up with the cleaning because I have to put all my energy into everything else. I usually just blame it on the dogs.”

8. “When dining out, I’m not trying to be a diva by asking to swap seats or adjust the lighting. The smallest flash of light can trigger an attack, and I don’t want you to witness that, especially in a public place.

9. “One thing I’m sort of self-conscious about is wearing a visor or hat, even indoors. I get headaches very frequently and even the smallest bit of light can cause me to get such a sharp pain that I have to close my eyes and stop moving for a bit.”

10. “When shopping, I park next to a cart corral with carts in it instead of looking for the closest parking spot (no disabled tag or sticker on my car – yet). That way, I have a cart to lean on when going into the store and I don’t have to go far to return the cart after shopping.”

11. “I use an Altoid mini case for the medication I need to take when I’m out in public. I keep my full bottles in my purse, but if I’m at work or at a meeting, I don’t want my peers to see me as someone who is sick so out come my breath mints.”

12. “I fidget a lot in class and constantly stretch or move around in my chair to keep everything in place and minimize stiffness from settling into my joints. To my classmates and professors it just looks like I can’t sit still, but I know I will be in pain later if I didn’t move.”

13. “I hold my breath when I am around people so I don’t sigh or groan from pain (then I don’t have to keep explaining what’s wrong…). It also helps me with my anxiety.”

14. “I arrive at appointments early. I can’t help it; I get so anxious about being late, and I also need to mentally prepare for the appointment. So I get there early and crochet or fiddle with a good fiddle tool.”

15. “I wear my heated wrap and scarves all winter and, keep my long hair – all to keep my neck warm so it doesn’t hurt so much and keep the muscle spasms and nerve pain to a minimum.”

16. “I concentrate on not falling down when I stand or walk. Just doing that is very tiresome but people take it for granted.”

17. “In the Netherlands we kiss three times on the cheek. However I try to avoid this as I have multiple sclerosis and don’t want to get extra germs and viruses. And when people are sick, even with a cold or the flu, I have to leave to protect my own body. People find me disrespectful as they feel like I avoid them like the plague; however I’m not so worried about them being sick, more me getting sicker and possible losing body functions or needing to go to hospital.”

18. “I’m constantly taking in my environment — where are the exit doors, the bathrooms, is the room to silent or are there enough sounds — so if my stomach makes weird noises nobody will hear.”

19. “I can’t hug people or shake hands because of my extreme multiple chemical sensitivity and I don’t always have time, energy, or the will to explain myself to everyone, so I just say ‘I can’t hug’ or ‘I can’t hold hands,’ and people are weird about it, especially the handshake one after they’ve ‘offered’ me their hand already. Oh well!”

20. “Everyone thought I was trying to be edgy when I had my head shaved. In reality my condition causes me not to have the energy or finances to wash and style my hair every day, plus the weight of long hair, ponytails, and headbands were causing lots of pain. Now I wear a buzzcut because it’s easy, cheap, and keeps the pressure off my scalp. A bonus is easier access to head rubs!”


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Living With a Chronic Illness in a City Without Lyft or Uber

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As the economy continues to evolve throughout the country, ride sharing programs such as Lyft and Uber have become a must-have in every city. Their prices are much more reasonable than a taxi and the drivers are quite friendly. But there is also another benefit to these companies that many people overlook — namely, safe transportation for many people with disabilities to appointments, hospitals, pharmacies, and grocery stores.

As someone who has a chronic illness, there are many days where driving is not even an option for me due to the physical symptoms and brain fog that come along with the illnesses. While that may seem like it has a simple answer of, “Well then don’t go driving,” it’s not that simple.

Chronic illnesses often require a full-time job’s worth of physician appointments, therapy, physical therapy, massage or other holistic medicine, pharmacies for medications, and many other things that fall within or in between these categories. Many times scheduling doctor’s appointments requires planning months in advance, especially for a new patient appointment.

When a patient with a chronic illness is unable to drive and unable to work, their income is severely limited. I will note that this also includes those who are caught in the savage process for disability coverage in the US resulting in two-to-three-year spans or longer (and that’s just waiting to see a judge) with a zero income. Sure you get back-paid, but in the meantime you have to eat, you have to go to appointments, you need insurance, and you have many other bills that don’t simply disappear when you suddenly become disabled.

Furthermore, patients with chronic illness are often faced with the unpredictability of the illness or illnesses. It has no rhyme or reason, and often can not be predicted in advanced as to what days will be good or bad. When a bad day arises and it is unsafe to drive, the patient is faced with a huge dilemma. It’s already hard to afford the appointments but they are a necessity for any sort of wellbeing. If they cancel, offices do not recognize that there are often legitimate reasons for canceling day of, especially for a patient with an unpredictable chronic illness. Trying to drive there would be like your brain wearing those drunk driving glasses from drivers ed; you see everything in front of you but the brain is unable to successfully process the signals it is getting due to the interference and murky field of vision it has on the matter. Now what?

There are a couple of options.

1. If you live in an area with decent enough public transit you can do this. However, safety is a huge concern with this as waiting out in the heat or cold is extremely dangerous to many with a chronic illness, let alone having to stand, walk further as stops aren’t close enough, or embark on over and hour or more ride having to leave at a very inconvenient time, taking up way more of their already severely limited energy supply.

2. See if friends and family can take you. That’s fine if it’s once and a while but others work and have their own responsibilities to attend to. This is generally not even an option in a very short span of time on the day of. It further reduces this as an option if you do not have family nearby or at all.

3. Call for a taxi. Most taxi rides today, practically from here to the corner are running upwards of $20 or even more. My last taxi ride a few years back was $57 from home to the nearest Walmart. The Walmart was only 15 minutes away. Not only is this a ridiculous amount of money, but it is quite literally highway robbery. Try affording that plus co-pays, plus food, plus medications, plus housing on a zero income. Good luck.

4. Walk. Haha yeah… if public transit has its safety problems for those with chronic illnesses, many of us whom are lucky to walk to the bathroom when we need it (still with excruciating pain) are screwed. Talk about a safety issue. Plus imagine a five- to 10-mile-away office or further. Care to join on this walk? Here’s a box of thumbtacks to put in your shoes for the little journey.

5. Medical transportation is not only rarely available on a day of need, but the prices for these services can be outrageous. They are often late and unreliable, resulting in still missing the appointments whether you wanted to or not. Never mind the extra energy needed to set this up and the process of insurance debacles associated.

So what other options would a person have? Before a few years ago, a hope and a dream. But today, a new way of doing things has come about. Ride sharing services like Lyft and Uber have provided many who face these issues with a solution that is not only convenient, but more reasonably priced, safe, and reliable. Add in not needing to process a payment directly with the driver and it becomes even more easy.

But what about those of us with chronic illnesses in places such as upstate New York? That’s right, New York City may have Uber and Lyft, but upstate New York sits awaiting its lawmakers to do something despite numerous overwhelming pleas from the community in all sectors across the entire state. For us, we are stuck seemingly in a twilight zone. It is a space between the present day and the past. The innovation is there just outside of our reach, but yet the leaders above us deny us the basic rights of a free economy and thus impact our health care in a negative way. For us, we are often faced with unnecessary charges from missed appointments, doctors who no longer see patients due to too many of these missed appointments, and high fees for rides from taxi services that should be held accountable for the price gouging tactics they consistently try to justify. But yet it doesn’t have to be this way. There’s a solution to the issue that is running throughout the country successfully and safely. It is there, providing many patients with a safe and affordable alternative for both appointments and medically needed trips, to short trips just to get out of the house on a good day and reconnect with friends and loved ones that the illness may have separated us from.

But unfortunately, many of us out here do not have this access. For us it is not only yet another denial of access to something beneficial, but is actually a barrier to us to receive the necessary health care we need in a safe manner, when the unpredictability of our unchosen illnesses decides to enter stage left.

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