People With Pre-existing Conditions Tweet #the27percent to Highlight Insurance Challenges

1k
1k
41

On Wednesday, Atul Gawande, M.D., a respected surgeon, author and the executive director of Ariadne Labs, shared a tweet highlighting the loss of coverage 52 million young Americans would face should the pre-existing conditions mandate of the Affordable Care Act be repealed.

The statistic — 27 percent of Americans under the age of 65 living with a chronic health condition — comes from a new Kaiser Family Foundation research analysis, highlighting the number of Americans who would be uninsurable if they lost healthcare coverage and had to reapply. Gawande’s tweet, highlighting the health challenges of his 21-year-old son, sparked a conversation among the disability and chronic illness communities on Twitter. #The27Percent shows those Americans, who, without insurance coverage, could lose control of manageable but life-threatening illnesses, potentially going bankrupt in the process.         

 

 

“I hadn’t intended to start anything with this,” Gawande told Stat. “But I guess what I hope and expect is that we can continue to make clear the names and faces and voices that this policy effects.”

Are you part of the 27 percent? Let us know how losing insurance coverage would affect you in the comments below. 

1k
1k
41
JOIN THE CONVERSATION

My 10 Achievable New Year’s Resolutions for My Life With Chronic Illness

291
291
1

Chronic illness has changed my life more than I ever could have imagined! My yearly, weekly, and daily goals have been completely transformed. Gone are resolutions like:

  • working out every day (I can’t at all because of my muscle disease)
  • going on a diet (I need to eat as much as I can of the food that don’t make me sick)
  • planning a tropical vacation (my vacations now are spent traveling two states away for a week at the neurologist’s office and the medical center)

That all might sound kind of depressing, but it’s really not. My life is pretty incredible right now as long as I focus on the positive and stay realistic with what I can do. I’ve decided this year to make, and share, achievable New Year’s resolutions:

1. Let go of the guilt. I have so much guilt: guilt for not being a physically active parent, guilt for not taking better care of the house, guilt for not making money, guilt for the intense medical bills… The list goes on and on. But I need to stop feeling guilty, a thing that makes me feel worse, and embrace peace, which will help me feel better.

woman taking a selfie outside in the city at night
A sparkly night in Nashville. Yes, my eyes are open – it’s the ptosis!

2. Let myself relax. This goes hand in hand with #1. I need to let go of the stress about things I can’t control, and sit back and stop worrying about every little thing.

3. Take time each day to just “be.” Easily said, but what does that mean? To me it means just sitting and doing nothing and enjoying the “now” in life. No worry or stress, just living in the moment.

4. Write as much as I can to spread the word about chronic illness and pain. There are millions of people with chronic disease and chronic pain, yet most people have no idea what it’s like to live with them. I want to be part of the solution to that problem. I want to actively spread the word so I can help others who struggle get the understanding they need and deserve.

5. Take time to make someone else’s life better. Whether it’s picking up something from the store for someone who doesn’t feel well when I’m out or calling a friend who is having a bad day, I want to improve the lives of those around me this year. Chronic illness can make me pretty focused on myself, and thinking about the needs of others helps take my focus off me.

6. Find better, simple foods to prepare in advance. Nearly everyone has a New Year’s resolution to eat better each year, but that is really difficult for me, as I often don’t have the energy to get down to the kitchen, let alone cook. Preparing healthy, tasty foods in advance is a must for me, but I just haven’t been doing it. Everyone suggests cutting up veggies at the beginning of the week, but that gets old after a while. I need to discover better, more flavorful choices.

7. Eat more chocolate. It just makes me happy! Sometimes that’s all the reason I need.

8. Write letters. It can be difficult for me to write with both neuropathy and muscle weakness, but it is worth doing when I can. Sending a letter is like sending a little present in the mail. A letter is better than email or a text because it can be held and saved. It’s a great way to let my family and friends who are far away know I care.

9. Spend a little frivolous money on myself. I feel guilty about buying things for myself because I don’t earn money right now. I do have money to take care of others and buy fun things for them. Sometimes I just need to do a little something special for myself, too.

10. Smile more. I saved the best for last. I need to use every tool I can to help myself feel better, both physically and emotionally (chronic illness and pain are draining). Smiling at other people tends to make them smile back, and I need all the happy faces I can get around me, especially when I’m having a rough day. I plan to laugh every day this year, and enjoy those good endorphins. My body might be fighting me, but I can choose to smile through it. Maybe I’ll make someone else’s day better in the process.

I hope my list inspires you to create your own practical New Year’s resolutions so you can make 2017 your best year yet. I know I plan to make it mine!

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

291
291
1
TOPICS
, Contributor list
JOIN THE CONVERSATION

6 Tips for 'Adulting' With a Chronic Illness

40
40
1

Let’s all take a moment to agree that adulthood is complicated.

I’m 24 and fairly new to adulthood still. I finished grad school a year and a half ago and am still participating in the whole “fake it ’til you make it” philosophy. I’m not ashamed that my dad still fills out my tax paperwork for me. On the other hand, I feel like I’ve been an adult my whole life. Chronic illness forces you to grow up faster than you might otherwise. And honestly, my name is Alice, I have arthritis and I basket weave. On paper, I’m 85 years old and have been for years.

My transition into adulthood included things faced by many 20-somethings, like paying bills or taking on buying a house. (Which, by the way, is terrifying. Although, a mortgage really puts student loans into perspective.) Becoming an adult involves a lot of trial and error. In case you were wondering, it is apparently no longer socially acceptable to wear a messy bun to work when you’re 24. I lost count of the number of coworkers asking if I was feeling OK.

On top of those things, there are also unique challenges many people may not deal with as a 24-year-old – such as filing an appeal with your health insurance company…and then filing another appeal…and then another. (Suck it, case manager. I win.) You have to schedule your own appointments and refill your own prescriptions. As an adult, you need to become your own best advocate. When you’re a kid, adults make a lot of your decisions. Once you’re an adult, you have to step up and take charge. This means making sure you understand your health conditions, tracking your own medications, scheduling your own doctor appointments, etc. Here are six tips for “adulting” when you have a chronic illness:

1. Make sure you understand your health conditions.
 It always surprises me when I meet individuals who have a chronic condition but don’t actually know anything about it. Knowledge is power. Make sure you are aware of your sources and who is informing your thinking. Be cautious with which online sources you read. Take everything on WebMD with a grain of salt. Talk to your doctors, and don’t be afraid to ask questions. I’m a very intelligent human being, and I frequently ask my doctor to rephrase using smaller words and pictures if necessary. Saying you don’t understand the medical jargon doesn’t mean you aren’t smart. It just means you didn’t go to medical school. Chances are, you didn’t, so it’s not like it’s something to be ashamed of.

2. Keep track of your medications
. I cannot overstate how important this is. I’m not asking you to memorize all the details. It never hurts to know all that, but it can run together when you take 15 prescriptions. I get that. This is what medication lists are for. You’ll want to include both drug name and the generic name, the dosage, why you are taking it, who prescribed it, when you started taking it and any potential interactions. Make sure any doctors making adjustments or adding a medication look at your list. This is particularly important in places like the ER. Those doctors aren’t familiar with your chart, so you can’t blame them for having no idea what medications you take.

3. Get comfortable seeing your doctor. Also get comfortable being honest with them. There’s a lot of sh*t I would rather not talk about with my GI doc (pun completely intended), but I don’t have a choice. Also, there’s really no good reason to lie to your doctor. Be willing to try new things. However, if you aren’t going to follow recommendations, tell them that. Find a different solution you can and will do. None of my doctors want me drinking coffee. I get that it. Doesn’t mean I’m going to stop drinking coffee. I’m very clear about this. If they want me functional, they will let me be strongly caffeinated at all times. I told my family doctor it was either coffee or hard drugs, and she could pick. She chose coffee. I’m glad, because I feel like coffee is probably cheaper and I now have a mortgage to deal with.

4. Understand that having a disability or chronic condition doesn’t make you entitled to anything. You may have been dealt a difficult hand in life. I’m sorry about that. I’m not saying it’s fair, but it’s how things are. You may have to work harder to achieve things, so get used to it. Use resources available to you to help level the playing field, but don’t expect anything to just be handed to you. Being sick doesn’t make you entitled. The world doesn’t owe you anything. I’m sorry if you find this offensive. It’s true, though. Everyone has something that complicates their life. Yours happens to be an illness or health issue. The sooner you stop expecting the world to do things for you, the sooner you can step up and live your life. Don’t use your illness as an excuse.

5. Make smart choices. If you know you need 10 hours of sleep to be functional, don’t stay up late watching talk shows. If you are on medications that interact with alcohol, don’t drink. Don’t eat things you know will make you sick. I get that it’s easier said than done. I can’t eat solid food. I frequently crave things I shouldn’t have. Doesn’t mean I’m going to go eat them, though. As much as I would love a hamburger, I really don’t want to be throwing it up three days later.

6. Organize your medical records. If you look up “most organized medical records complete with color coordination and different sections for various specialties,” my name will show up. I’m not messing around when it comes to records. The more you have and the better they are organized, the easier your life will be. You may not think a doctor will ever ask for a list of all biological drugs you’ve ever taken, the dates you took them and why you stopped – but it totally happens. There’s not one good way to organize your records – do what works for you.

Now, all this sounds well and good. I like to think I do all of those things. Don’t think, however, that doing them magically makes adulthood easy. It doesn’t. I still give myself a pep talk most mornings that involves threatening various organs if they don’t cooperate. Something along the lines of: “I am a grown a** adult. I have my sh*t together. I will not fail at life today. Stomach, if you don’t keep your crap together, I will beat you.” Just remember, adulting is hard for all of us, so you’re not alone.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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

40
40
1
TOPICS
, Contributor list
JOIN THE CONVERSATION

Nonprofit, Room For Joy, Redesigns Bedrooms for Kids With Chronic Illnesses

3
3
2

Arizona-based nonprofit, Room For Joy, provides medically appropriate and imaginative bedroom makeovers to kids with chronic illnesses.

Read the full story.

3
3
2
TOPICS
, Video,
JOIN THE CONVERSATION

I Don't Know How to Accept My Illness

441
441
3

Over two years ago I woke up from a nap with a fever of 104 degrees and severe pain. The fever went away, but I never really recovered.

Since that fateful day I’ve been diagnosed, misdiagnosed, and called a faker, but one stage I haven’t been through is acceptance.

I don’t know a lot about what my future will hold with my illnesses. I could get better, I could get worse, I could stay the same. So far each new year comes with new diagnoses.

If you ask me what my future with chronic and rare diseases looks like I will say that I will be living in a world where I feel almost fine but will retain the wisdom that being sick has given me.

Here’s the flaw in my dream:

I will likely have many “side effects” of my illnesses that will affect the rest of my life. And some of the things that my test results have shown may cause me to need treatments for the rest of my life.

Every single day I hope that maybe today or tomorrow I’ll wake up and my joints won’t hurt and I won’t be fatigued and I won’t have to isolate myself due to my practically non-existent immune system…

I hope so badly I’ll look online and there will be a headline that they’ve found a cure…

I also (quietly) hope one day I will wake up with acceptance for my illness, to possibly stop grieving the person I could be… the person I feel I should be.

I don’t know how to accept my illness and my pain, but I do know that every day I will fight this with all I have.

To quote John Green, “I’ve figured something out. The future is unpredictable.”

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

Thinkstock image by zatelepina

441
441
3
TOPICS
JOIN THE CONVERSATION

17 Reasons People With Chronic Illness May Have Such a Hard Time Finding Love

226
226
2

Love rarely comes easily. But when you’re living with chronic health conditions, you may experience challenges in dating and relationships that healthy people don’t have to worry about. A good partner would need to be understanding of your health and open to working together to figure out what a supportive partnership looks like for you, which may look different than a partnership between two healthy people. It’s not impossible to find love, but chronic illness can undoubtedly make it more difficult.

We asked our Facebook community to share why they believe people with chronic illness may have such a hard time finding love. Their answers provide insight into the hurdles people with health challenges must overcome to date and find love — hurdles that can hopefully become easier to tackle with a greater understanding from their prospective partners.

Here’s what they told us: 

1. “It’s hard to find love, more specifically with a healthy person, because they do not understand our [pain]. They get upset when we have to cancel plans, which in turn causes us to feel guilty, which only makes our health worse.”

2. “People automatically assume if they take you on you’re going to be a burden or a chore to deal with because of the illnesses you have. And in some cases people don’t want to be seen with someone who has an obvious illness because of the use of a cane, wheelchair, or some other medically needed device. People don’t want to be stared at because they’re with you and you’re obviously ill.”

3. “It’s hard to find love as someone with a chronic illness because our health always has to come first and that means putting your significant other second sometimes, which not everyone can handle.”

4. “It’s so hard to find a person willing to support the multiple bad days. Took me 14 years to find a kind man who could handle all my issues with pain and depression.”

5. “Meeting people and dating can be a challenge when you’re never sure if you’ll feel well enough to go out.”

6. “For me, I think it is related to the fear of being judged as less. What if my struggles and ‘baggage’ somehow overshadow how awesome I am?”

7. “I’ve known at least two instances a young man’s father has literally taken him aside to say, ‘Do you really want this burden your whole life? Leave now while you have a chance.’ So I say pressure by family, elders, and peers to avoid those of us with chronic illness can often deter prospects of love or put strain on a developing relationship.”

8. “It will always feel unbalanced. My boyfriend has been with me during my journey to finding a diagnosis and as my health gets worse, our relationship naturally becomes more strained. He will always be taking care of me, or deal with me backing out of plans, or just plain not being able to do what we used to enjoy doing together. He loves me and wants to see me feel better, but our relationship will never be fair. Somehow though, I found a person who is willing to deal with that because he loves me.”

9. “You’re scared. Of opening up, of trusting someone, of letting someone know that you’re not OK. You put on a brave face for so many people, but it’s hard to decide who you want to take it off for. In lasting relationships, the mask will eventually come off. You have to decide who is worth that, who you are willing to bare your being to, and who you are hoping might choose to stay by your side.”

10.It is hard for others to understand that life is different with a chronic illness. My family still thinks I will wake up one morning and everything will be all better. How do you bring someone into that life and ask them to love you. For better or worse, there really isn’t going to be a better.”

11. “Because we’re too exhausted too even think about going out or on a date after using all of our energy towards things that need to be done like school, work, cleaning, taking care of a family, etc.”

12. “You’re so accustomed to putting a mask on over your pain every day — a smile, makeup, ‘I’m fine’ — it’s a hard habit to break. Letting someone into your world is scary; vulnerability is scary. Besides, allowing yourself to love and be loved is a challenge for anyone, regardless of your health.”

13. “The stigma my diseases are treated with make me feel like a burden to literally everyone around me. It’s incredibly hard to love when you feel so hard to love most of the time.”

14. “Many people are not strong enough to deal with everything that comes along with being a caregiver. Relationships are hard as is. Start adding in chronic illness and you’re playing love on hard mode.”

15. “It’s hard to find someone who understands that I want to spend time with them, but sometimes that has to be indoors only because the light hurts and sound hurts.”

16. “For me, it took a long time to value my own worth and realize I deserved to be treated right. And to voice my limitations.”

17.It’s hard to find love with a chronic illness, because most of us cannot even explain to ourselves what’s happening. Symptoms get mistaken for laziness, feelings are hurt. Words cut deeper than a knife sometimes. I believe if patients had more of an understanding of what’s going on with their bodies it wouldn’t be so scary or misleading to their loved one.”




17 Reasons People With Chronic Illness May Have Such a Hard Time Finding Love

226
226
2
TOPICS
, Listicle
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.