Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.
While it might be easy to understand why we’re not up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.
Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.
You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said.
And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.
Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.
You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to deal with it myself, but I do what I can to keep that side of my illness hidden.
This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.
Part of that is for your sake. I don’t want you to feel uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.
And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.
So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.
There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.
For some people, the high school experience is defined by sports games, high school boyfriends, friends and parties. Or maybe that’s just a misjudgment I’ve made based on high school movies. I still think even the snarkiest people have some faint optimism their high school lives will be like “Ferris Bueller’s Day Off” or “10 Things I Hate About You.” Heck, I wouldn’t have minded if it was “High School Musical.”
For me though, a person who’s had health issues affecting nearly every body system since I was 13, high school was defined by medical situations. It was blood tests before school and after-school doctors’ appointments. While some people missed a week of school to go away to a sports camp or a music event, I was in the hospital, catching up on work in a stiff bed and asking the night shift nurses to explain a biology concept while they did observations. When I was in classes, I struggled. Grade-wise, I was on top of the world. I could have gotten into an occupational therapy course in my country. However, it wasn’t hard to miss that I was dizzy; walking a few extra meters could mean passing out. Some days I was nauseous and didn’t eat much. One time, I remember being self-conscious to wear a bikini because of the black and purple bruise marks all over my ribs, collarbone and legs.
However, I graduated. I finished my exams. My school uniform was discarded. I was onto the next stage of life. But what is the next stage of life when you struggled through the previous one? For me, a top student and a “Type A” person, the next step was university. I packed up my suitcases, and my dad dropped me off in a place where I didn’t know anyone, at a university I didn’t know much about. However, it was the course I wanted to take.
Before I moved and before graduation, people who had known me for years asked where I would be living. I said my grandma’s house. However, when I moved out with scholarship money that could cover my rent, I decided I could be my own woman: cook my food, vacuum my carpet, sleep whenever I wanted. Hadn’t I outgrown the chronic illness thing?
In retrospect, I think the issue was that I associated being ill with a place. The concrete stairs I had fainted on at school, where they had to call an ambulance because I hit my head. How I always got dizzy on the long walk from biology to English. How every Friday I would go home on the bus, walk into my house and fall asleep, not waking up until mid-Sunday morning.
Then there were memories associated with chronic illness being a time in my life. I could mistakenly think it was something like puberty — something with an end date that I would outgrow. For example, when I got my period, I got so dizzy I almost fainted. When the first guy I really liked told me he found someone else, I was waiting to be admitted for two weeks of inpatient rehabilitation. Chronic illness, high school and growing up were all intangible concepts.
It took me a solid year to remember what chronic illness was like, and it was a year and a half before I dropped out. I tried too hard until one day, I wheeled into the student guild in a wheelchair, and my friends (who I had never mentioned health problems to) wondered where I had attained such an object. The hardest thing was realizing some of the reason I crashed was my own fault: the alcohol I drank even though I shouldn’t have, the awkward meal times with clumsily arranged food, the weird sleeping schedules. After I realized that though, I could pick myself back up. I realized I had done well managing my health as a teenager, and I could do the same as an adult.
Now, I no longer do occupational therapy but have re-enrolled in law school and am excited for what being a not-so-healthy university law student can bring.
The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit A Story page for more about our submission guidelines.
There will always be hard days, and for those who face chronic illnesses, another 24 hours can sometimes seem insurmountable. On days like these, a little uplifting reminder can help. We asked our readers who live with chronic illness to share some of their favorite mantras for getting through tough days.
This is what they had to say:
I have to give myself permission to slow down, rest and ask for help. — Rachel Jackson
It isn’t weakness to need to take care of my health. It’s OK to have fears for the future (that it may get worse, that a treatment may stop helping, etc.) as long as I don’t live in them. It’s OK to grieve for what I’m missing out on and the life I had before, and sometimes it’s even OK to wallow in it. But mostly, it’s OK to just be and to get by. I don’t have to be Superwoman or a poster child for strength in my illness. — Selena Marie Wilson
6. “I will not fight my body, And I will not fight my pain. But I will fight the fear, And the one from which it’s made.”
I came up with this mantra based upon my faith. I don’t want to fight myself because I feel as if that would make my condition worse. I will fight the fear that this illness strikes into my heart because I know I can be much healthier without that fear. — Hayley Rose
You have to allow yourself to celebrate the small things; they’re what help us push on to another day. I’m too stubborn to give up. — Carris Brown
9. “It’s not ‘Can I do this?’ It’s ‘How can I do this?’”
I’ve told myself that my whole adult life because giving up and not doing certain tasks are not options for me. — Racheal Nodurft
10. “It’s my life, and you can’t have it.”
On the days when it’s hard to even get out of bed because of the pain, I tell it that. — Kimberlee Brown
11. “Everything counts.”
On bad days I tend to focus on [everything] my pain and fatigue are keeping me from accomplishing (i.e. the kitchen is a mess, I didn’t get the laundry folded, etc.). Reminding myself self-care is an accomplishment and an important one, helps ease the tirade of negative thoughts. So ‘everything counts.’ I got up today, remembered my meds, managed to keep breakfast down, colored a page in my new book, etc. It counts, it’s important too. — Tia Borkowski
12. “Breathe in strength and blow out your fears.”
A few days ago I went for a test, and the lady told me that, and it has kinda stuck with me. — Megan Wall
What are your favorite mantras? Let us know in the comments below.
Being a mom is one of the greatest gifts in life and is full of joy, but it comes with its fair share of challenges. When you have a chronic illness, parenting has a whole new set of challenges and worries, along with new highs and lows that are not just yours but theirs: repeating the word “no” a million times, dealing with lost shoes and socks, the never-ending chores and washing pile, the temper tantrums at bedtime and when they can’t get their own way. It can take its toll both mentally and physically.
But how do you look after a baby when you can barely look after yourself some days and just want to sleep the day away? How can you juggle doctor and hospital appointments and a baby all at the same time?
A few times I had been called “Superwoman” for doing it all myself, especially after my ablation. I was too stubborn to ask for help and support or simply felt guilty leaving my son, Kian. But if there’s anything I have learned, you have to be well enough yourself to look after them, like on a plane when the cabin crew says, “Fit your own masks before helping others.” That’s such a big thing when it comes to being a parent with a chronic illness, and it took me a long time to find a balance with the whole spoon theory. As a mom, you can’t just take a nap and gain some spoons back – you’re on the job 24/7 with no coffee breaks except for a good night’s sleep if you’re lucky. The saying of “needing eyes on the back of your head” is so true.
When I was pregnant, everyone would go on about the labor and birth, and I spent my whole pregnancy absolutely terrified, preparing for what was about to come, from the excruciating pain to becoming a shell of my former self. But I believe labor is the easiest part — you can take drugs to help ease the pain of labor, and like everyone says, you forget the pain. You’re crying because you’re setting eyes for the first time on the bundle of joy you carried and felt wriggle inside you for nine months. But nobody warns you or prepares you for how difficult and challenging being a mom can be, and being a sick mommy means the road is even bumpier. But it’s all about learning and doing things a little differently.
I want to share some of the things I do that have helped me with my heart problems. You did not choose to be chronically ill, so get rid of any guilt that is eating away at you. You won’t always be the best parent, partner or friend, but nobody is perfect. Remind those around you, especially the children in your life, that you love them and that you are there for them. It may not be in the ways you had originally planned or hoped, but it is no less valuable or meaningful. A cuddle or reading a story, wiping the grazed knees, saying “I love you” and above all just being there when they need you are the most powerful things you can do as a mom. Take each day as it comes and let the expectations of what you “should” be doing fall by the wayside. Try to live in the present and find the balance in your life, focusing on all the good things. This attitude will help you go a long way towards maintaining a positive outlook about being a mom with a chronic condition.
1. It’s OK to ask for help. It doesn’t make you a failure.
I was never one to ask or admit I needed help and always tried to do it all on my own, with the fear that asking for help made me a bad parent. The thought of failing Kian but not asking for help just made my health worse.
I was exhausted mentally and physically, which made my heart 10 times worse, which just meant I ended up in the hospital or too unwell to look after Kian at all. It wasn’t nice being stuck in hospital away from him for a few days. If I had just accepted or asked for help in the first place, I wouldn’t have became so exhausted. So I guess what I’m trying to say is rule number one: Asking for help if you need it doesn’t make you a bad person. Everyone needs help, and asking for help helps you, which in turn helps out your little one. I learned that nobody judges or thinks any less of you by asking for a helping hand.
2. Find the balance.
Parenthood and chronic illness become a huge part of your identity, and both can fight for control over your life, time, energy and, some days, sanity, and it’s frustrating. Since Kian is only a baby he doesn’t understand, so I learned I can’t blame him when I do need an extra five minutes in bed or a rest. Just learning to adapt helps. I found by taking him along to a local play cafe that’s covered in mats and baby-proofed, I could let him crawl about and play, and I could sit on the comfy sofa with a cup of tea and just switch off for those five seconds without the worry of him hurting himself. The added bonus is that there are other children there, which meant I could have a cup of tea without a baby grabbing onto my leg, demanding me to play. So always make sure you take care of your own personal well-being, as well as caring for others. These are all important for finding balance.
3. Get the extra support that’s out there.
I was amazed at how much support is out there for moms and dads who do need extra support, whether it’s due to an illness, being a single parent or even just finding the whole parenting thing difficult. There are places to go where you can speak to someone about lacking confidence to go out and do things, or even to just talk to a friendly face. There is support that won’t judge you – health visitors and your own doctor can guide you in the right direction. Even reaching out to other people via support groups who are going through similar struggles can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice. It’s a great way to meet new, understanding friends.
4. Know your limits and don’t overdo it.
If you are having a bad day or you feel like you’re running low on spoons, order takeout for dinner and ignore the housework — it can all wait. Your health and well-being are more important than a dirty-dish-filled sink or a messy floors. Don’t focus on the negatives. This is easier said than done, but understand that you are not your illness. The ability to find some good in even the smallest things can change your life on a daily basis. It’s amazing how changing your mindset can help mentally as well as physically. Rome wasn’t built in a day, and if you start looking at life from that view, you will realize you will get there eventually, knowing your limits and boundaries.
5. Limit children to one baby-proofed room.
Limiting small kids to one room and baby-proofing it can make things manageable when you’re having a bad day. I got down on the floor to their level and hunted and moved anything and everything that could become broken or go in small mouths and put a stair gate on the door. I didn’t bother with fire guards and instead blocked the fireplace and TV with the coffee table and large toys that stopped Kian from getting through. Yeah, my living room looks so untidy with toys and things everywhere, but it makes it great for a day when you need to lie back on the sofa and you can still keep little ones in your line of vision. You will feel like Superwoman not only managing to lie down to feel better, but also managing to look after the little one, too.
6. Learn to put your needs first.
I know this sounds like such an awful thing to say and obviously as a parent your child is your number-one priority, but be assured, this is a good step in achieving optimum levels of health, both physically and mentally. You cannot be your best for others if you are not your best for yourself. Find time for a quick bath, listening to some music or doing anything that you enjoy, whether it be when the kids are asleep or letting the hubby take over for a night. Putting your needs first will improve your health. It’s amazing what recharging your batteries can do.
7. Remember that kids get bored at appointments.
Having a chronic condition means the endless trips to appointments. It’s no fun getting an electrocardiogram done and having a screaming, bored baby in the pram. I try to get someone to look after Kian, but it isn’t always possible. On many occasions I have been trying to listen and discuss my heath with doctors while Kian was crawling around the room. Sometimes I have had to feed him a bottle just to get him to sit, and sometimes I have even found myself apologizing to doctors for Kian’s behavior. But they’re kids; they get bored. Hospitals are warm and stuffy, so who can blame them? One tip I found is giving Kian a new toy to play with. It doesn’t have to be anything expensive, and it’s normally the small, silly things they like the best anyway. Kian’s favorite is spoons or anything that makes noise, and that helps see him through the appointment. There’s always the bonus that everyone is so friendly and chats away when you have children with you, and on some occasions Kian has even gotten some pennies for his piggy bank, so it isn’t all bad if you do have to take them with you.
8. Don’t be afraid to go to groups.
This was one I wish I had done sooner with Kian. You hear the word “toddler groups” and you think about 3-year-olds running around, but actually there’s something out there for all ages. Getting out and meeting new moms and children is such a good way to discuss parenting. It’s also good for the kids to meet other children and learn to share from a young age. I found it also kept me sane because it can be a long, boring day when you do feel well enough to venture. I found everyone was so friendly at groups, and if I was left sitting alone, the teacher of the group would always come and chat anyway. By going to one group, you learn about others, and it’s great fun playing with messy play and getting involved. It kills a few hours and keeps the kids amused. Places like the library, museum and park are also good and totally free, or the good old favorite: a walk. All the groups you do pay for are mostly small donations, so if you are having a bad day, it doesn’t matter if you don’t go.
9. Always remember that the struggle won’t be forever.
Don’t ever let a chronic condition stop you from having what I believe is the greatest gift in life, and that is having someone call you mom.
From the moment you hold your baby in your arms, you will never be the same. You might long for the person you were before, when you had freedom and time and nothing in particular to worry about.
You will know tiredness like you never knew, and days will run into days that are exactly the same, full of feedings and burping, crying and nappy changes, whining and fighting naps or lack of naps. It might seem like a never-ending cycle.
But don’t forget there is time for everything. One day you will carry them on your hip, then set them down and might not pick them up that way again. You will scrub their hair in the bath one night, and from that day on they will want to bathe alone. They will hold your hand to cross the road, then might not reach out for it again. They will creep into your room at midnight for cuddles, and it could be the last time you wake to this.
The thing is, you won’t even know it’s the last time until there are no more times, and even then it will take you a while to realize. So while you are living in these times, always remember there are only so many of them, and when they’re gone, you will yearn for just one more day.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
I am here watching you both sleep. It’s 5:06 a.m. and I’m awake because I’m in pain. It’s peaceful here with only the sound of you breathing, the cat purring at your feet and the tapping of my fragile fingers on the keyboard. As I watch over you both, I think of all the things I wish and hope for you and your futures.
I wish that medical professionals will believe you when you tell them there is something wrong. I wish that when you tell your teachers you’re not feeling well, they will believe you. I wish that when you tell me and your daddy that you need help, we can do that and to the best of our ability.
I hope that as you grow up, we can do everything in our power to prevent you from experiencing the type of pain and anguish I go through almost every day. I hope I can be a good enough mom for you both. Most of all, I hope you won’t grow up to hate me because I was too sick to play or get up out of bed. I hope you will understand that I didn’t get up out of bed because I was saving my energy to do something fun with you another day.
I pray you will grow up and live a normal life. I pray you will get the best education, in life and in academia. I pray you will find a job you love but never feel like it is work. I pray you find love with man or woman, and they will accept you with all your flaws and imperfections. I pray that you appreciate them, as I have appreciated your father for loving me, despite the difficult days. I pray they treat you the way your father has so graciously treated me.
I know that should you experience any of the obstacles I have faced, you will be far more equipped to deal with them than I ever was. I know you will be strong and determined as you have been in everything you do so far. I know you will have days where life is just too damn hard, that there seems to be no end to the uphill battle, but you will continue on. I know that when you should decide to become parents yourselves, you might know this guilt I feel now about passing on these “faulty” genes. But please remember — this is not your fault. You cannot control your genes as I could not control mine.
You begin to stir next to me now. No doubt you are looking for what you affectionately call “mama” as you nuzzle at my chest. And you, my love, at the end of the bed sighing in your sleep as if your dreams are giving you relief.
I want you to know that I love you, deeply and unconditionally. I hope you know I’m trying every day to be the best mom I can be, and I pray you will live a healthy, happy life.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.