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10 Ways to Support Your Chronically Ill Friend

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Chronic illness can be quite traumatizing, especially if it is an invisible and poorly understood illness. Fighting for a diagnosis. A parade of physicians who can’t help me. Friends and family who can’t possibly understand what my life feels like now. I am terrified, and don’t know where to turn. There are not many specialists who can help me, and the waiting lists to see them can be years long. I feel absolutely miserable both physically and emotionally.

I know that sometimes it can be confusing to love someone with a chronic illness. Here’s what I want my friends and family to know.

1. Believe me. The best thing you can do for me as a person with chronic illness is believe me when I talk about the way I am feeling. For people with invisible illness — like postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, chronic fatigue syndrome or fibromyalgia — that means you can’t see my level of suffering. When most people get sick, they have a fever, swollen glands or a runny nose that allows others to see they are not feeling well. That is not the case for people like me who are living with invisible illnesses. What does it look like if I am dizzy? Can you assess my level of fatigue without feeling it yourself? What does neuropathic pain look like to the outside observer? Please believe me when I tell you that I don’t feel good!

2. Listen to me. I need to talk to process my feelings. Let me cry. Acknowledge and accept my struggles. I may need to tell the same story several times. Talking about my experiences with chronic illness actually makes me feel better, not worse. I don’t need you to fix me. Just listen to me and allow me to express my pain and frustration.

3. Be here for me. Call me, text me or reach out in some other way regularly to reassure me you are still there. Don’t be so afraid of saying the wrong thing you stay away. Chronic illness is isolating for me.

4. Be yourself when you are with me. I still have the same interests and sense of humor I had prior to my illness. Tell jokes. Share stories from your family or workplace. Reminisce with me about the good old times.

5. Ask permission before you share my diagnosis with other people. I may not want to have conversations about my illness with casual acquaintances or in my workplace. Sometimes I want to be able to pass as healthy. My diagnosis being common knowledge at work may change the way I am able to do my job.

6. Help me to feel hopeful. If you know someone else with my illness, don’t give me the doom and gloom version of their story. Each of us is different, and just because they had a good (or bad) outcome doesn’t mean that I will, too. I need to hold onto my hope for a better future.

7. Understand that sickness does not equal sadness and healthiness does not equal happiness. People find illness depressing, so when I talk about it, they get uncomfortable. My illness doesn’t have to be sad, it’s just what’s going on in my life right now. Also, just because I’m feeling happy doesn’t mean I physically feel better. I have to make the best of my current health situation.

8. Tell me if you don’t know how to handle my illness. It’s OK to say, “I don’t know what to say.” Not everyone intuitively knows how to be there for a person with chronic illness. If you don’t know what to do, please ask! We’ll be better friends down the road if you can be honest with me now.

9. The Golden Rule doesn’t always apply. I may have very different needs than you would if you were in a similar situation. Please listen, ask me what I need and then follow my lead. Often I want and need quiet.

10. Don’t blame me for having chronic illness. Our society tends to blame people for becoming sick. Perhaps you think I didn’t exercise enough or eat well. Maybe I used to smoke or drink alcohol. Nothing that I did or didn’t do made me sick. Chronic illness can happen to anyone.  Nobody deserves to feel like this.

A version of this post originally appeared on Standing Up to POTS.

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A Doctor Told Me I Was Faking My Pain

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If you’re a healthy person, you’ve probably had some pretty decent doctors in your life. You go in, get a checkup, maybe some antibiotics every now and then. However, I haven’t been this lucky. Now to be forward, I love my current doctor, who diagnosed me with postural orthostatic tachycardia syndrome (POTS). He has been a saint to me and helped me with a condition no one else would touch, but before him was a different story. I encountered a doctor who refused to help me.

I was in the peak of my mess: ridiculously thin, missing all of school, unmedicated and undiagnosed. Several doctors had told me to “wait and see.” Well, my mom and I weren’t going to sit around anymore, and I was brought to the ER for immense pain.

I let my mom describe my pain to the doctor. I was too exhausted to do it anymore. We had to tell the story every few days. The nurses keep poking at the veins; they missed maybe three or four times. They left me with an IV in for over an hour. The doctor returned.

“How are you feeling?” he asked me.

“About the same,” I said truthfully.

“Oh don’t worry, we’ll get the morphine going soon,” he said.

“Was that not what you were doing when you did that to her?” asked my mom, pointing to my patched up arm.

“Well, we wanted to see if the pain was real or if she was seeking drugs.”

arms After a Blood Test
After a blood test

I could see the anger rise into my mom’s face. A trained medical profession let me, only 16 years-old at the time, continue in pain because he didn’t believe anything could be wrong with me. “Her kidney ultrasounds from her last visit were clean,” he continued. “There’s no clear cause of her pain.”

“That’s why you look for a cause,” my mom snapped back.

“Ma’am, the ER is not a place for diagnosis.”

“If it’s not for help or diagnosis, then what’s it for?” My mom stood up at this point.

“I’m going to recommend a therapist and some vitamins,” the doctor said.

“Vitamins? A therapist? Did you check her white blood cell count from last time?”

“She is faking this.”

“How do you fake a count of over 20,000?” Several nurses came through the door and started to hurriedly take out my IVs.

“Ma’am, I am a doctor!” he shouted in my mom’s face.

“So am I!” my mom shouted back. At this point I let out a small laugh, because my mom is not a medical doctor, but rather works at a community college. The doctor didn’t need to know this though.

“Look what you’re doing to your daughter!” the doctor said. “She finds this entertaining. She’s doing this for your attention.”

“No I’m not!”

This went on while nurses took out of my IVs and sent us on our way, with only a patched up vein and no help to send with us.

I’m not going to lie about the situation and say that it made me more understanding of doctors; the situation was awful. If any good came from that horrible visit, it’s that I can give advice to someone else. It provided me the material to help those who undergo similar problems, because, unfortunately, ignorant doctors are far too common with invisible illnesses. If multiple doctors do the same thing, they’ll fill your mind with their lies — you’ll become distrustful of your own condition.

If a doctor(s) ever does this to you, do not question yourself. The pain you feel is valid. The mental struggles you face are valid. None of this is in your head. Other people have encountered the same dreadful doctor. When you’re low and wondering why no one believes you, remember someone does. There a whole community of people — whether they are family, The Mighty members, or friends — who understand and can see what is happening. This is real, and so is the love and support from everyone except the one who doubted you.

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3 Reminders for When I Get Caught Up in the Before-I-Got-Sick Me

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When I was in my sophomore year of high school I was diagnosed with postural orthostatic tachycardia syndrome, or POTS, after months of being symptomatic. The onset of POTS was sudden. One week I was playing all four quarters of a basketball game, and the next I couldn’t stand for more than a minute without feeling dizzy and nauseous. Because of this, it’s become so easy to think of myself as before-I-got-sick me and after-I-got-sick me. But when I’m feeling down and reminiscing about “the good old days,” I try to keep a few things in mind.

1. I’ve been able to discover more about myself.

Being away from athletic activity, friends, school, and life in general left me with a lot of free time, albeit fatigued. Through this, I’ve been able to discover a love for music and art that has stayed with me, even as I’ve been able to return to some activity.

2. I’m more understanding.

Living with POTS has opened my eyes to the world of illness and disability, and I do my best to reserve judgments for others now as a result. Whereas before I may have raised my eyebrows at someone sitting down in a grocery store or sleeping at a museum, I’ve now become one of those people, and am able to see the world from a new perspective.

3. I’m still me.

Although I’ve gone through a major life change, I’m still the same person. My circumstances have changed, and my viewpoints have been shifted, but at the end of the day I’m not so different than the girl sprinting for a lay-up two years ago.

A chronic illness diagnosis rocked my world, but I won’t let it dictate my life. While some aspects of my life will never be the same, I know I can always count on myself, my thoughts, and my ideas to stay with me, no matter the battle.

Image via Thinkstock.

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I Wouldn’t Be Who I Am Today Without My Chronic Illness

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The battle you face when your chronically ill is exhausting. It’s a constant battle not only physically but mentally and emotionally. Being chronically ill isn’t what you may think it is — a severe cold here or a hospital visit or two there. It’s a constant war that your body is fighting to stay alive.

I have postural orthostatic tachycardia syndrome (POTS) and a handful of other things I deal with every day. Most of the doctors I’ve seen have never even heard about it, or they know someone who knows someone who faints every now and then if they don’t drink enough water.

Life, at times, can be difficult. There is so much I wish I could do, so I dream about doing those things every day. But I am blessed with the life I have.

The hardest part about being chronically ill is the feeling of being small. You feel like this little girl who isn’t capable of doing the simplest of tasks. There are days I am completely bedridden. I’m homebound and away from work, school and my friends. I was supposed to be doing activities in high school and experiencing once in a lifetime events but I’m in bed.

I started to feel sick when I was around 9 or 10. We noticed something was wrong when I started got sick at the drop of a hat and became horribly winded when I ran up and down the basketball court. I suddenly became too tired to attend dance class. (I live and breathed ballet at the time and would do anything to be in class.) Then one morning, I suddenly fell. But before that life-changing moment, when I had my first near-syncope episode, I had a fulfilled life.

I mean, don’t get me wrong, I am so blessed by the support of my mom and my significant other. I am far better off right now than I was last November when I was diagnosed. I miss the days when I could stay out late and wake up early and when things were carefree. Man, do I miss the feeling of normality.

Even though I’m able to go to work and attend school at my local college, I never forget I am sick.

There are days I believe it’s the worst I have ever felt. I can’t get out of bed and have to have my mom bring me Gatorade,

My medication and food. This is when I’m hardest on myself. I know I can do these simple tasks, but my body fights me. I beat myself up because I should be able to do these simple tasks. I’m ashamed by the fact I’m so dependent on others.

I feel like I let everyone around me down: my friends, my family, my coworkers. But it’s the exact opposite. For those who are chronically ill, we have to tell ourselves that it makes us stronger and more determined.

I am amazing. I continue to fight every moment of the day to keep living just like every other healthy person. I have learned to act as if I am OK to make others around me happy. I have become the master of chugging bottles of water and nasty-tasting electrolytes, waking up at 7 a.m. every day to make sure I take it slow and watching my carbs, protein and sugar intake due to hypoglycemia. (Having POTS wasn’t enough, so adding more things for me to handle makes me a great juggler.)

Getting ready for class and making sure you have enough spoons for your day.
One spoon to get out of bed, two to shower and another three just to make it to class and get in your seat on time.

Then recalculating your spoons because you have dance class later and you need to dance hard to show you know your routines because you have a show coming up. But you don’t have enough spoons. You can’t do this without your spoons. How am I going to have enough spoons to get through this day? Stand up to go get fresh air because your heart is fluttering because you don’t have enough spoons. Then slam, you faint, you’re out of spoons.

Somehow, I can still get ready, pull myself together and smile. I do this without telling anyone I cried myself to sleep because I had a sensory overload and felt pity for myself and those around me who have to deal with me. I have war that is constantly happening within me, and I am gaining ground every day. I can go to work and attend school with my heart flying, thinking I am about to pass out and no one would ever know. I now know the expression “grin and bear it” as if I made it myself.

This is what I have learned in this sometimes unfair world. I am blessed to be able to live, breathe, laugh and all the beautiful things that come with this crazy thing called life.

Yes, there are times when life can be cruel and unfair, but I am beyond proud of myself. I have such a high understanding for others living with the pain of a “chronic illness.” I wouldn’t be the person I am today if I hadn’t faced challenges. I may never be the person I have always dreamt of being, but I will be much more than I have ever hoped.

Lead photo source: Thinkstock Images

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When Your New Diagnosis Has You Questioning Who You Are Now

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“Who am I?” It’s a question that seems to rattle through the minds of most 20-somethings. I have many friends who go on “Eat, Pray, Love”-type journeys through the world hoping to discover who they truly are and what their purpose is here on Earth. Questioning your identity and purpose seems to be a pretty well accepted rite of passage. But what happens when you think you’ve found who you are and what your purpose is, and then everything changes?

In my late 20s, I found myself on a journey of self-discovery. I spent two years working through anxieties, challenging my low self-image, and healing old wounds from the past. I learned to accept and love myself for who I was: loud, energetic, boisterous, friendly, optimistic, nerdy, goofy, talkative, and passionate about life. I accepted my old battle scars and found a way to break free from negative forces that had been feeding into my self-loathing. My daughter was only 2, and yet I saw so much of myself in her as well, and I wanted to model to her the ability to love and accept oneself. Loving her helped me to love myself.

And then, one day, everything changed.

I went to the ER one day with violent tremors, chest tightness, blurred vision, mental confusion, nausea, and feeling like I was going to pass out at any moment. Since that day, I have been diagnosed with postular orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos sydrome – hypermobility (HEDS). I quickly learned that I’d had HEDS my entire life but had never been diagnosed, my symptoms always being dismissed as something else. POTS, however, was new to me. It hit me hard and has yet to back off. Even with medication and lifestyle changes, I still struggle every day to complete a fraction of what I used to be able to do.

At first, I denied that my diagnoses would affect my identity at all. I held on to the hope that this was temporary, a fleeting illness that would leave as suddenly as it appeared. Now, almost a year after this began, I am being told that it is most likely something I will live with for the rest of my life. I still have not fully accepted this fact, and may never truly accept it, but part of the process of acceptance for me has me yet again asking the question “who am I?” and “what is my purpose?”

Before becoming ill, I would dance and sing wherever I was; at the grocery store, at work, standing in line at Starbucks, walking up and down the stairs at home. My daughter and I would have dance parties daily where we would jam out to her favorite songs. I would sing her lullabies (well, if “Let it Go” counts as a lullaby) every night. I directed and acted in plays, something that I had been doing since I was a little kid. I would play games with my middle school students that had us running around the classroom together. All of these things seemed so integral to who I was, and I can’t do any of them now.

I find myself often feeling lost, confused, angry. How did I get here? Why did this happen? What will my future be like now? I felt that I had just finally reached a place of happiness and purpose, and now I had been thrust out into the abyss of chaos. There are days when I feel like I am falling, spinning, and reeling through space and I can’t get my feet back on the ground. I lost a person I truly loved, myself, and I am not sure if I will ever find her again.

Now, I am tasked with the job of trying to find myself again. Well, maybe that’s not entirely accurate. It’s more like I am rebuilding myself. My illnesses tore down and destroyed so many of the building blocks that made me who I was before. I’m now searching for new building blocks as well as sifting through the wreckage to see which blocks may have survived.

I am still a mother, significant other, teacher, daughter, sister, mentor, and artist. The way I fulfill these roles has changed greatly, but they are still part of who I am. I have not lost that. I cannot sing, dance, and act onstage, all things I’ve spent my whole life doing, but I can write and maybe even find new ways to express myself. Due to the fatigue, I am not as energetic or boisterous as I used to be. However, I am still friendly, goofy, nerdy, passionate and optimistic. I can’t be as social as I want to be or as active in the world as I once was, but I am still here. I am still trying. And I still matter.

There are times when I will look back at what I used to be capable of and I end up feeling so small in comparison. Or I will watch others doing the things I wish I could be doing and feel jealous or sorry for myself. But I try to instead look at what things I do still have as well as what things I can still do. I get excited now by little accomplishments that I never would have thought twice about before, such as: sweeping the floors, a day without a headache, walking without assistance, surviving a social outing, a week without a doctor’s visit, etc. I feel the “old me” deep down inside screaming for the chance to dance, sing, and be the life of the party again. But then I think that maybe being able to do those things weren’t as important to my identity as I thought they were.

Maybe I haven’t really lost what made me “me” after all. Maybe all of those actions and activities aren’t as important as my attitude and spirit. Maybe in the mix of all the things I’ve lost, I have gained quite a few things as well. I’d like to think that through all this I have become a little stronger, a little more understanding, a little more educated, a little more emphatic, and a little wiser. So, the challenge may not be in trying to find or redefine who I am. The real challenge is in finding how to hold onto who I am through it all.

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What It Really Means When a Person With Chronic Illness Decides Not to Walk

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As I muse on my change in circumstances with postural orthostatic tachycardia syndrome (POTS), I run my situation through various lenses from my studies of anthropology to my stores of fantastical tales. I find myself in the land of bipeds. Our predecessors made great headway when they began walking on two legs, allowing for their hands with opposable thumbs to work on tool use. I watch my nephew crawl over to a table and lift himself up while the family cheers him on, encouraging him to stand on his own. We speak of strength and courage metaphorically as “taking a stand” or “standing one’s ground.” Standing is part of what makes us human.

Standing makes me weak. The longer I stand, the less blood is in my head and the more blood pools towards my feet causing my body to get weak and my mind to grow foggy and distant. The ground begs for me to embrace it, for all I need to do to seek relief is to let go of standing and to get horizontal, to lie down and take the burden of gravity off of my nervous system, my heart, and my veins. And if I do not lie down in time, my body will surely give way and come crashing to the ground. In the land of the bipeds, lying down is akin to giving up and failure, yet this is where my strength and clarity lies.

I am changing, slipping away from the upright human biped I once was. I have fought, kicked and screamed. I have gone to doctor after doctor, received a variety of treatments, and followed the directions of doctors. There is a perception that doctors can treat and cure diseases and conditions and that if a person is not healthy, it is because that person is doing something wrong — that they are responsible for their own demise. It makes people feel safer to believe that, but of course it is not true. You can do everything right and still be sick and still get worse because the field of medicine is science and not magic. There comes a time when one has to stop kicking and screaming and move towards acceptance and adaptation. If anthropology taught me anything, it is how strong the drive for life is and how adaptation is the key to survival.

My adaptation is to lie down and to you bipeds, this may look like giving up, but it is not. Professionals, family, and friends alike wring their hands that my body will atrophy and I will waste away to nothing. No. I have a physical therapist. I am exercising, but I do so while lying down. I know walking is our primary means of locomotion. I use mobility aids. I use a wheelchair at times. Wheelchair use does not mean that I cannot walk or that I will get “too” dependent on it and waste away. Please understand that every time I walk, I feel very ill and I risk injury from falling. I want to go outside. I want to feel the sunlight on my skin and the fresh air in my lungs. I want to be part of life and I can’t always do that on my own two legs. I am so tired of feeling faint and falling. When you see me in a wheelchair, please see that I am actively engaging in life — I am adapting. I can still exercise, but it doesn’t have to be upright, it doesn’t have to be walking. If you see me in a wheelchair one day and walking the next, please recognize the variability of my condition and that adaptation is custom fit for each day as it comes.

The daydreamer in me thinks back on the story of the mermaid who so desperately wants to be part of the human world that she wishes for legs. Depending on which version you read, her success varies, but in the original, she is returned to the waters as sea foam. I grew up walking through this bipedal world and now see myself more and more in the metaphor of the mermaid. As much as I want to walk, skip, and run through this world, to be a part of it, I need to find another way. There is no magic sea witch or prestigious doctor to grant my wish. 

So, I will be a mermaid in the land of bipeds. I will give my body what it wants and recognize that my body doesn’t work like everyone else’s. I will adapt and find methods to be fit in my own way and use mobility tools when needed to stay engaged in this world. It may not be conventional, and many may question why I have “given up” or “let myself go,” but I will know that my choices reflect my resilience and strength.

The next time you see someone with chronic illness or disability and question their choices, please take a moment to reflect on what it might be like to live as a mermaid in this world. What would you do to adapt and how would it feel to have others expect you to be something you simply cannot be?

Follow this journey on Chronic Gravity.

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