The Trickle of Jealousy That Runs Through My Relationships With Healthy People


I’m a jealous wife. I’m a jealous friend. I’m jealous of the stranger on the street, the put-together moms on the school run, and the frantic ones, too. I’m jealous of stay-at-home moms, I’m jealous of working moms. I’m jealous of my hairdresser, the lady in the fish and chip shop and the garbage man. In all honesty I’m jealous of pretty much anyone — well no, not anyone. I’m jealous of the healthy. I’m jealous of the able. I’m jealous of those seemingly better equipped to cope with chronic illness or disability than me.

To admit to being jealous is a scary thing for me to do. People assume that if you’re jealous of someone, you automatically harbor resentment for them. You wish them to fail, to be “brought down a peg or two,” for them to be miserable. A jealous person is a horrible person, right? For me, I hope that is not the case. That’s not how I roll.

Just because I’m jealous of you doesn’t mean I wish bad things upon you. Honestly I am the biggest cheerleader when my friends and family achieve something. I’m always incredibly proud. I just wish I was able to live like “normal people” do. It’s hard not to hate yourself when you have a trickle of jealousy running through every adult relationship you hold. Particularly on days that trickle becomes a raging torrent, sweeping away your sensibilities and spewing forth over whoever unwittingly triggered it. Usually this happens on a hard day, a day full of pain and exhaustion, but that’s no excuse.

I think I find dealing with the jealousy I hold towards my husband the hardest to deal with. My husband is my caretaker. He does so much for me, and our children, to the point he’s given up work to keep me safe and as well as possible, losing his social life somewhere along the way, too. So what do I have to be jealous of? Well, I will tell you…

I’m jealous of the fact he is the main caretaker now, not just of the kids but of me, too. I’m jealous that he can get up in the morning and function. He can do the school run and shopping and anything else needed. I’m jealous that he can run around with our children and make them squeal with sheer delight. I’m jealous that I’m often stuck in my bed and missing the children growing up whilst he’s in the thick of it. I could go on, but you get the idea. What makes things worse is on top of the jealousy, there’s the thought that if you’re jealous of someone who does so much for you, you must be a bad person.

So I’m letting it go. Not the jealousy, I know from years of experience (and counseling) that while I’m this ill, jealousy will factor into my life. I’m giving up feeling bad about it.

My jealousy is my own. It’s my cross to bear. I’ve come to realize I’m not jealous so much of what you can do, it’s more because of what I can’t. If I have to choose, I would rather deal with feelings of jealousy than feelings of self-loathing. I’ve been there and it’s no fun. So I’ve accepted my jealousy and I’m not going to feel bad over it. As long as it remains a trickle most of the time, and I can still live and be happy for those around me, then I can live with that. On those bad days, well I’ll do my best and I’m not above apologizing if I’m in the wrong. As for my husband, he knows me well enough to realize how much I truly love and appreciate him.

Besides, while I’m jealous I have the extra impetus to keep trying. Pushing forward. Moving on. Living my life to the best of my ability.

Follow this journey on This Little Life of Mine.


12 Ways to Make Sure a Chronically Ill Friend Doesn’t Feel Left Behind


People with chronic illnesses aren’t sheltered from reality. They know their lives have made a dramatic shift. The majority of them had full, happy lives prior to becoming sick. That means they’re mourning much of the life they unwillingly lost, including the friends who decided it was too much work to maintain a friendship.

I teach people to concentrate on the positives in their lives and to practice gratitude for the friendships that have survived because those people are their true friends.

To understand that a chronic illness doesn’t have to lead to chronic unhappiness, we need to realize our new lives don’t have to be emotionally wrought with pain, even as our physical bodies might be. Patients often question how to maintain a social life with their heathy friends. They also question how to avoid feeling left behind when their health interferes with activities their friends engage in as life moves on for everyone else.

One of the worst things someone with chronic illness can do is make a mistake in the balance between keeping a social life and overextending themselves. Misjudging their energy and strength can lead to more relapses of symptoms or worse.

Here are some helpful hints for how friends of people with chronic illness can assist in maintaining friendships, while still doing things that will be enjoyable for all people involved!

1. A visit to a chronically ill person’s house to talk can mean just as much as a lunch or coffee date out.

For a big treat, stop by on the way over and grab a surprise cup of our favorite coffee or a frozen yogurt. We can have just as intriguing of a conversation sitting at the kitchen table as at a diner or coffee house, and we will be much more comfortable. This will keep us from being sequestered from your lives, yet keep us from the trials of going out.

2. We are really proud of you for that marathon (5K, swim-a-thon, bike trip, hike, ski trip) you just completed!

If you see a sad look flash across our faces, it isn’t jealousy — truly it’s not. It’s the utter sadness that we know we will likely never get to experience that accomplishment with you and wishing we could join you. But please, please share away. We want to be part of your life, and we want to know your joys. Don’t hide them from us. Please don’t be offended if it takes us a second to catch our breath before we belt out a hearty, “Congratulations! I’m so happy for you!”

3. We’d love to go shopping with you.

We still like to do the things we used to do, and we don’t want to lose all of the shared times we had with you. We only ask for your patience with our pace and your understanding when the trip is abbreviated due our pain, fatigue or weakness. We can always look at it as an excuse for an extra-long lunch — dessert included. But either way, please treat us tenderly if the day doesn’t go as planned.

4. We miss our nights out on the town.

We remember “dancing on the ceiling” and not “going down ’til the sun comes up!” But unfortunately, these days, nights like those might end with us at the hospital emergency room. If you have a great girls’/guys’ night out planned, it would be nice to include us for dinner before you go on to party. That way, we can still feel a part of your night life, but be back home in our comfy clothes before it’s time for our next dose of meds. We can still “party like it’s 1999” at dinner!

5. We can’t join in leisurely bike rides, hikes and nature walks with you like in the past.

Consider going with us on car rides to see the fall foliage or on a short walk at a park with a nice, flat trail. Or join us for a picnic and enjoy the scenery from the convenience of a picnic table. We can still enjoy nature, but it will just be at a slower pace!

6. Offer to drive if we’re going on a long outing.

I know, for me, it takes a lot of energy to get ready, then driving takes more energy and the activity takes even more energy. (Heck, I’m ready for a nap after I shower and get dressed.) By the time I have to drive home, sometimes I’m so tired I’m scared to try. If you can offer to pick me up and drive to our destination, it takes away two of my responsibilities — aka two energy-zapping activities. Then I can spend more energy on talking and listening to you, enjoying our chosen activity and walking a few more minutes.

7. I really, really don’t care if you drink.

My not drinking is not an indictment of your drinking. I’m taking medications that make drinking dangerous. And no, I’m not exaggerating that, nor am I making it up. You, on the other hand, continue to badger me about drinking. Now, that might make me mad. But you having a glass of wine, shot of tequila or a bourbon and Coke, while I have my Shirley Temple as we chat doesn’t offend me. Drink away! Live your life!

8. I’m not lazy, I’m ill.

When I stand for too long, my body hurts all over and I get very tired, very fast. Please don’t think I’m trying to end the conversation if I say, “Hey, can we find a seat?” I probably want to continue talking to you, but I just want to do it in a more comfortable position — sitting down. We can resume our challenging debate about climate change protocols in Siberia once I’m cozily nestled in my lawn chair.

9. Some chronically ill people are unable to leave their houses, which is even more isolating.

If you’re friends with someone who is housebound, you could offer to visit and cook dinner together and bring a bottle of sparkling cider or, if appropriate, wine. Bring a pretty tablecloth and a candle or small bouquet of flowers to set the table like at a restaurant. Play music in the background, so your friend feels they’re transported out of their house. Sharing an evening’s dinner will brighten their day and give them a short respite from the monotony that constantly being at home brings.

10. Treat us like a friend.

I have heard the following from countless people:

“I am a fallible human. I feel alone and scared. I don’t want to be sick, and I don’t want to miss out on life and the things my friends and I used to do. I will make mistakes as I work my way through this ‘new normal.’ I don’t want to be seen as ‘that sick girl/guy.’ I want to be seen, first and foremost, as me, the same person they have always known, just with some physical accommodations.

If I cancel plans on my friends at the last minute, I hope they try not to take it personally. I hope they will take a breath and remember that even if I am smiling, I’m dealing with something they don’t fully comprehend inside. If I make a mistake, I hope they will tell me, with love, so I can do better.”

In short, treat your chronically friend, like, well, a friend!

11. Please don’t make fun of me, call me a liar or doubt my sincerity.

It hurts my feelings when I have to miss outings and nobody seems to care about the emotional impact. It’s so hard to admit that I can’t go to outings that sometimes I’m willing to sacrifice my health and go anyway. Admitting I can’t go is a big step that takes bravery. Please be kind and understand what a loss this causes me to feel. Again, treat me like you would treat a friend.

12. Sometimes it might seem that I’m self-centered, but I don’t mean to be.

For instance, if it seems all I talk about is my health, and I don’t ask about you, it’s not because I don’t care. I may be scared about an upcoming result, or I may have been isolated and not talked recent events through yet. But that’s no excuse. Ask me when you get a turn to talk. Just do it with kindness, and I promise to give you the same courtesy. Allow me to treat you like a friend, including accepting my apology when I mess up.

Know that friendships are vitally important to people with chronic illness, just like everyone else. We value our friends and we miss the friends we have lost to illness. We know it is a little extra work on both of our parts, but we want our friendships to be stronger than our bodies, which can happen if we work together.

With a little bit of thought and teamwork, chronically ill friends don’t have to feel left behind.

Follow this journey on

Lead photo source: Thinkstock Images

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How to Fight Chronic Illness Like a Gymnast


woman doing a handstand The #FinalFive is cleaning up in Rio!

As a former competitive gymnast, and mega-fan of all things related to the Olympics, I couldn’t be any happier. As a person who has been really sick lately, it’s a little discouraging to see there are people out there my age and older in the midst of Olympic glory. If you, like me, are feeling a little bummed, try a different mindset. Remember you’re a fighter too.

Generally, I don’t like to think of myself as fighting chronic illness because I recognize that my illness is a part of me, and being at odds with myself is silly. That said, sometimes this life is hard. Sometimes it is a fight, and in these times I fight the only way I know how: like a gymnast. Although I’m no Olympian, the sport I love taught me a lot of valuable things during my formative years. In honor of Team USA, I’m going to share some of the most important lessons gymnastics has to offer for a person with a chronic illness.

When You Fall, Get Back Up!

This is gymnastics (and life) 101. You are going to fall (figuratively, and if you’re like me, literally too). When you do, get back up and keep going like nothing happened. You can take time to review why you fell and work to make things better when it’s all over, but in the moment, the most important thing is to get back up.

Set Goals for Yourself (That Don’t Depend on the Actions of Others)

Our coaches impressed on us that we shouldn’t set score goals because we don’t have control over the judges. Similarly, setting a goal to be pain free would be haphazard. Of course that would be ideal, but I don’t have complete control over whether and how well treatment works. Instead, I set goals I can accomplish. I can choose to eat in a way that supports my optimal health. I can choose to complete my physical therapy exercises. I can work to make sure I remember all of my medication. See what I mean?

You Are Stronger Than You Think You Are. Act Like It.

One of the coolest things I learned from my years as a gymnast is I can do hard things. So can you. It doesn’t mean I should always push myself to do those things if it’s not necessary or is going to come back to bite me later on, but it’s so so helpful to know when I have to do things like medical tests and procedures, or power through something that must be done. I can do it (whatever it may be), and if I so choose, I can even do it with a smile. That’s what gymnasts do.

Believe That (Almost) Nothing Is Impossible

This is a fine line for people with chronic illness or pain, I know. The word “can’t” was not allowed in my gym. We were required to do push-ups every time it came out of our mouths. That’s because you never know what you actually can do until you’ve tried (and tried again, and again, and again). So this is my rule: always try. If it doesn’t work out today, it’s OK, but don’t decide it will never happen. Be like Alice in Wonderland! Some days I believe (and) do six impossible things before breakfast (or at least things which I thought might be impossible that day). On other days I don’t get anything done at all, but I believe I might be able to do them again tomorrow.

Never, Ever Give Up (Never Say Die)

Don’t confuse this one for never rest. Rest is important. Don’t confuse it for not feeling natural emotions (of course you will feel them when you meet adversity). Take time to rest, feel what you need to feel, and then keep on working. Whether it’s working at a new skill in the gym, or working on making progress in the treatment of your chronic illness, don’t give up. Keep reaching for the best possible outcome.

Special thanks for this post goes to all of the coaches whose messages will forever resonate in my heart.


10 Tips That Help My Relationship Survive My Chronic Illness


They say you fall in love when you least expect it.

I have always found this to be true. I have been in love as an adult three times in my life and each time was unexpected. I wasn’t looking, just doing my usual weirdo bookworm introvert thing and… then bam! The entire experience of someone I didn’t “see” coming and sweeping me off my feet was always tremendous and life-changing.

I suppose you could say the same for chronic illness and pain. It blindsides you much like love but only leaves chaos in its wake, like a bad break-up that never ends. It’s a heartbreaking thing and will affect everything, including and especially your primary relationship: your significant other.

Being chronically ill can change everything in your life, but one thing that usually gets hit the most is your relationships, specifically the one with your romantic partner (if you have one). No matter long you were together “before” and the roles you each inhabited within the relationship, those roles change. The changing is hard, frustrating, and painful for both of you. Before I got sick, I was the breadwinner and did most of the cleaning in the house. I could pick up groceries after work and feed the dogs in the morning while my husband Sean still slept. I was equal partner in our relationship, someone who could pull their own weight.

It all changed when I got sick.

My first photo in my wheelchair

So what in the world do you do as a couple to navigate these huge losses and deal with the ups and downs of chronic illness?

Well, here are some tips from us that may help you.

1. Be honest and communicate.

I know I know this is kind of important advice for all couples, but I want to especially focus on it discussing chronic illness and relationships. I have found it’s best to keep talking, keep telling each other what’s going on even when it’s uncomfortable or scary. It’s so easy to get cut off from one another and that will over time create a split in your relationship. I used to keep things from Sean because I thought I was “doing him a favor” by not telling him how bad stuff was, he let me know repeatedly that he wanted to be fully a part of my life and that “protecting him” just put distance between us.

2. Accept that there will be resentments on both ends.

I had a spectacular home nurse last year who I became close enough to that we would talk sometimes the entire few hours that I got my weekly IVIG infusion. One day we talked about how Sean was doing with everything and Charles (Charles, I miss you!) told me I needed to give Sean room to be angry and resentful. It was fantastic advice. It’s hard to watch the person you love become sick and it sucks to have so much more riding on your shoulders.

You miss your partner and you can sometimes feel resentful of all the changes that happen even though you cognitively understand it isn’t your partner’s fault. The person who is sick may also feel resentful. It’s hard to not be jealous of your partner’s ability to go do what they want and it’s lonely to be sick alone at home because your partner is out trying to conquer the world because you can’t. Talk about it and don’t take the resentment personally if you can. I like that Sean can tell me sometimes he’s angry or resentful and it doesn’t hurt my feelings because I know he needs to be able to say it without me getting mad.

3. Make time together.

Being sick can zap the romance out of your relationship real quick. Gone are the days of date nights and going out sporadically. That doesn’t mean you can’t spend time together, it just means you have to be a little more creative. Set aside a night at least every other week where you are together — no phones, no computers for a few hours. Watch a movie and get some take out or make a quick easy meal you both enjoy. Be with each other. Do a picnic in bed or a picnic outside if your body can tolerate it. Play board games or do a puzzle together. Put on your favorite song and slow dance or just hold hands while sitting side by side. Read a book and take turns  reading out loud to one another.

Just make sure to be with each other in shape or form once a week or at least a few times a month.

4. Intimacy may look different than before

I’m going to be real frank here so listen up. Your sex life may suffer when you are chronically ill and pain. You may be too tired to do it or you may be in too much pain. Lots of medications like opiates and SSRIs can do a real number on your sex drive. Some people have chronic pain in their private parts which makes sex sometimes almost impossible.

I know for myself being touched anywhere is sometimes too uncomfortable, I have nerve damage in my groin, and my ongoing nausea is a real mood killer, too. It’s upsetting, embarrassing, and frustrating. I used to beat myself up about this constantly and get stuck in an inner dialogue of what a terrible unsexy partner I was. Please don’t do that.

One thing that I have learned through this experience is stop viewing sex through a heteronormative lens. Sex doesn’t always equal putting part A in part B… sex and intimacy can happen in all kinds of variations and ways. Stop beating yourself up over what you used to be able to do sexually and focus on what you can. Intimacy is intimacy, and chances are your partner will be grateful for whatever you can do, so just be intimate with another in whatever form you can. If they aren’t appreciative or complain a lot or make you feel guilty… ditch their ass to the curb. These links have some helpful tips (here and here) and is fantastic.

5. Don’t talk about your illnesses 24/7.

I know it’s hard when your body dominates your brain 24/7, but let’s face it. Talking about illnesses, pain, and medical stuff gets boring… fast. I know I get really sick of talking about it. I know Sean does, too. Sometimes he will just say “OK I need to change the subject” and sometimes I just do my best to spend the day without bringing up my body. You both know what’s going on and you both need a break. You are not just a sick person and your partner is not just a caretaker.

Chronic illness can complicate things but you are still you, the couple you were at the beginning but wiser and more wary.

6. Understand that one of you doesn’t have it worse than the other.

I once read a post on Reddit’s popular “subforum” Relationships. It was from a man whose wife was chronically ill but seemed to have given up on life and expected her husband to not have a life outside the house. I commented about my/our experience and then saw a comment from someone who was also chronically ill. One thing that immediately stood out to me was “She has it worse than you.” That comment bothered me a great deal.

I think it’s dangerous to think that you ever have it worse than someone else and I think it’s also not good to think you have it worse than your spouse. Yes I understand that I deal with things Sean doesn’t — 24/7 chronic pain, chronic nausea almost as bad as my pain, being disabled. That being said, Sean deals with things I don’t. He mourns the woman he met and fell in love with, he deals with powerlessness as he watches me writhe in pain. He often has way more responsibility because I can’t contribute.

You both are dealing with tough situations, and being competitive about who has it worse is toxic to your relationship.

7.  Have outside support.

Social support when going through hard situations is so imperative. I have found that it’s especially important with chronic pain. You both need to people to lean on as you navigate this hard journey together. Just relying on each other isn’t enough. You each need friends and family members to talk to, to go out and do things with, and someone who will give you advice when you need it. Your partner may sometimes feel emotionally tapped out so you need others to help out when you are feeling blue or frustrated with the situation at hand.

8. Be clear in what you need from one another.

Some days I just want Sean to read my mind and understand what I need/want that day. I’m sure he feels the same. Unfortunately, neither of us is a mind reader. Assuming your partner understands you may need more help because you are in a flare-up or assuming your partner senses you are stressed out from having more responsibilities means a fight or argument may ensue. Even though our partners may know us very well, you can’t believe that your partner always knows what you need. Some days I want Sean to hug me if I am having a bad pain day, some days I don’t want to be touched but I want him to sit next to me for a few minutes. He may not always know what I need that day, so I need to tell him. This goes for Sean as well.

9. Do some counseling.

Sometimes couples counseling is necessary. Don’t feel guilty about that. It can be hard to figure out how to deal with the big emotions that come with chronic illness. Tension can run high and you may fight more than you used to. Sean and I have done a few sessions of couples counseling and it’s been immensely helpful. We can talk in a safe space with someone who has no ties to us and has helpful advice about certain dynamics we run into. Going to see a counselor doesn’t mean your relationship is bad, you just are going in together to get a “tune up” and strengthen your bond.

10. Don’t compare the present to the past.

This one is a hard one. As I recently talked about in another post, it’s so easy to get caught up in mourning for the past when you were once healthy. You both yearn for those times when things were more simple. You may compare things about your relationship to “before.” Try not to compare, though; your relationship can be just as important, worthy, loving and fun as before you became chronically ill, it just will look different.

You may find that you are even closer than before you were sick because of what chronic illness can do to your heart and soul. You see sides of each other you never saw, you may see kindness and strength in parts of your partner you didn’t know existed. I know I have seen wonderful sides of Sean because of me being sick. He is so giving, so kind, and takes incredible care of me. I had seen these parts of him before I was sick obviously, but how incredibly selfless he is has been amplified 100 times from our current situation with my health. He has said the same thing about how I supported his mom through cancer and then supported him with her passing.

man and woman in hospital bed under blanket
Cuddling during my first ketamine infusion

Relationships are work and I truly believe a long-term partnership is more about how you handle the hard stuff together than it is about the easy good times. I told Sean when we got married that wherever our journey together takes us, I would walk with him through thunderstorms and dance with him in the sunshine. We said I love you for the first time on a day with blue sky and no clouds…

and since that day, we have weathered so much hardship, sadness and many metaphorical thunderstorms. We have walked in the dark and lost our path several times.

woman in wheelchair dancing with husband sitting in chair
Slow dancing in my wheelchair (photo by Doug Stanford | Post + Production)

There’s no one I would rather do it with, whether I walk beside him or roll. Our love can survive anything and I love Sean so much more deeply since I have gotten sick.


When I Realized I Needed to Be Honest With Myself About My Chronic Illness


After receiving a diagnosis and coming up with an agreeable treatment plan, you go through stages of grief. It’s pretty typical no matter the ailment. When you’ve been coping with a chronic condition that’s been mostly in remission for a while, it’s tough to keep a brave face because you’re tired of going through this. Again.

I very quickly became mad. Mad at myself for thinking I could relax and be safe. Mad that my stupid body was once again failing me. Mad that I’d finally gotten in a good place mentally. Just mad. I thought anger would help.

But then grief came along. Grief momentarily paralyzed me with fear. It would be so easy to fall into a pit of despair, and I understand why some people do.

So I quickly moved to denial. I never followed the rules, so my stages of grief did their own thing. In order to get out of the rabbit hole of depression, I found myself saying things like, “It’s not that bad.” People would ask me how I am, and I’d say, “Fine” or “OK” or something empty. I was saying it for me, but I was saying it for them, too. I didn’t want people to worry or look at me like I’m dying.

But then I realized today, after talking to my wonderful doctor’s assistant, that I have to allow myself to be honest. This sucks. This really sucks. I’m certain it will get better, but for now, my reality is that I’m in pain every day. I’m struggling holding it together. I’m experiencing side effects that are affecting my daily life. And it’s going to get worse before it gets better.

And the truth is, I’m a little scared. There it is. I’m scared of the unknown, not knowing what might happen and knowing the next six months of my life will be a question mark.

But that phone call today really made me realize that it’s OK for me to be honest, and that I’m not OK. It’s OK to be honest and ask for things I need at work, at home, with friends and my community. The future of my health is dependent on my honesty about what’s really going on with me. And it’s also dependent on the support I receive from my medical providers and the people in my life. They can’t help me if I’m not honest.

But I was also reminded that I’m not alone. I’ve already received tremendous support from the people in my life. But knowing I have that support from my medical community is so priceless. She told me they’re with me, every step of the way. They will intervene for me if needed. Both of my specialists contact me between appointments to check up on me. It’s every patient’s dream to be this supported.

I think it’s really important for people to not be ashamed of what they’re going through. You’re not wallowing in self-pity and you don’t have to think positively. You should be allowed to be honest about what you’re going through without being ashamed or fear appearing weak. People shouldn’t expect you to be brave. You will be better prepared to deal with the situation if you are honest with yourself, and those around you will be more prepared to support you, too.

And I guess that’s acceptance.

Lead photo source: Thinkstock Images


Why I Choose to Write About My Chronic Illness


Writing about my health so publicly can be a really weird thing. Even a few years ago, I would have never dreamed about doing it.

Health is something most people consider to be really private. But now, in pretty much every health community, we’re seeing more and more people “coming out” to share their lives and experiences with the world.

I read something last week that said people sharing blogs and posts about their challenges with hot-button health problems is a form of shameless self-promotion.

I don’t think that’s fair or true for the majority of people that choose to do that. But then, I’m not really able to talk for anyone else. All I know is it’s not the case for me.

For most of my life, I would lie about the extent to which I was unwell — basically hiding it as much as I could possibly do (depending on the severity of my symptoms).

I guess part of it was that I really never thought it was anyone else’s business, but the other part of it was not having a diagnosis until I was 21.

Rather than actually realizing there was something systemic going on, we just thought my body was a bit weird.

That’s kind of a funny thing to think about, really. With the constant pain, frequent dislocations and fatigue, we never thought it was anything. It was a long time ago.

The other day, I realized I have been dealing with chronic health issues for the better part of two decades. That’s a bloody long time.

Granted, when I was super young, my ability to dislocate my knee didn’t cause me any pain — it was my party trick.

Oh, the good old days.

Even after I had my diagnosis, I generally only told people when it served a purpose. For example, to miss a class at college, we used to have to provide a letter from our doctor. Every single time. We had an attendance policy, and if you missed 20 percent of your class, you would fail it. Well, the nature of my health problems is that I never know what or when something is going to happen, and about 99 percent of the time I don’t go to the doctor. I just deal with it myself. My mom actually had to call my college to explain this, and eventually, I got out of having to deal with attendance as an issue.

I remember one day going onto my campus with crutches (my funky blue and purple ones) and splints that were covered in multicolored tape to hold my joints in. Everyone just stopped and stared and asked what the hell had happened to me. I think they thought I’d been in some kind of car accident.

After first joking I’d been in a fight (you should see the other guy!), I realized I actually couldn’t say anything other than “my body has just decided to go on a bit of a holiday.” Nothing had actually happened. People found this confusing. And while I understand it, it’s one of the hardest things to deal with. People looking at you and not seeing and not understanding.

Over the years, I’ve had to leave educational opportunities, miss out on trips, go on trips and cry in the bathroom, leave internships and quit jobs because my health started to flounder.

At one point, it all started to get a bit too much, and I started to write a blog that I didn’t expect anyone to read. But I found it extremely cathartic. That old blog, which doesn’t exist anymore, was pretty much a mind dump, and it really helped me to find ways to figure out how I felt about what was going on with my body. It was a way to vent to the only person I knew who really understood. Me.

Now, I’ve realized I write for more reasons than that. I write because I don’t look sick. I write because society expects you to keep pushing on when they don’t believe you. I write because others need to know that they’re not alone.

I write because at 26 I refuse to believe that my health will stop me from doing everything. I write because part of me is scared that it will. I write because if more people understood invisible illnesses, my life would be easier.

I write because if people don’t write, then how will people hear us. I write because It feels good. I write because it’s cathartic. I write because it’s important. I write because it connects me with a community. I write because I hope it will change something.

Even just a little bit.

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