Alana Schuurs

@alana-schuurs | contributor
Alana Schuurs has multiple autoimmune conditions, but her main challenge has been rheumatoid arthritis, which she’s had since she was 29.
Alana Schuurs

Arthritis: Feeling Desperate for Treatment, Relief From Chronic Pain

Before I developed rheumatoid arthritis I thought I understood what desperation was. I thought desperation was wanting to see my favorite band play live and being “desperate” to get tickets. I had no concept that desperation could be a long-term feeling or the sheer magnitude of it.   When I consider the times when I cope worst with my health conditions it is nearly always desperation at the heart of my distress. I can go for months managing the pain and inflammation and physical difficulties then out of nowhere the desperation wave crashes in. The only way I can describe it is as a wave. Not a gentle one, but rather a tsunami that engulfs me. All of a sudden I can’t take the pain another day and am desperate for relief. I think about the future and am desperate for a cure as I cannot imagine living this way forever. My desperation mounts and I find myself pleading with the universe to give me even a small respite. A moment of peace. A day feeling strong and able and capable of doing whatever I want. At its peak the wave drowns me and I lose sight of everything. The light and joy fade from the world and for a while I simply survive. I survive because the wave always passes. When it does I can see clearly again. I can be grateful for my blessings and shift my focus back onto my strengths. I can meet my pain with acceptance and dignity. I remind myself of the people in my life who anchor me during the flood and keep them close. As hard as it is at the time the wave is worth surviving. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Ig0rZh.

Alana Schuurs

Taking My Medically Complex Son to Playgroup With Rheumatoid Arthritis

“Have you taken him out to a playgroup yet?” It’s the same question I’ve been asked at the last three child health checks for my son. “No, it’s been really busy.” I drop my eyes to the floor as I get the same look from the nurse again. Only this time there is a comment, too: “You need to make time for him to socialize. Prioritize it.” I try to explain that I have regular playdates with other mums and babies but I’ve already been dismissed by the nurse. We move on to the developmental check and that leads to a referral to yet another specialist for my medically complex 7-month-old. Of course that right there is part of why we never make it to a playgroup. What I want to say to the nurse is this: I’m the mum who is trying to juggle multiple medical and specialist appointments for my son. I’m the mum who is sitting with my son doing exercises over and over again so he can catch up on his milestones. I’m the mum who was all ready to go to playgroup last week but my son needed to sleep more than he needed to socialize. I’m the mum who is doing her best to manage her rheumatoid arthritis so it doesn’t flare again. I’m the mum who was diagnosed with cancer six weeks after her son was born. I’m the mum who had surgery yesterday to remove three new abdominal tumors and still made it to her son’s appointment this morning. I’m the mum who is in tears because she needs to prioritize lying down rather than taking her son out to playgroup today because she is so exhausted and in so much pain. I’m the mum who is just trying to survive so that my son will still have a mum. Perhaps though it really all comes down to the same thing – I’m the mum who wishes playgroup could be the highest priority on her list. We want to hear your story. Become a Mighty contributor here.

Alana Schuurs

Don’t Say ‘At Least It’s Not…’ When Talking About Someone’s Health

When I was first diagnosed with rheumatoid arthritis (RA), quite a few people said to me, “At least it’s not cancer.” At the time I understood what people were getting at. After all, I just had painful joints, right? People with cancer have to undergo exhausting treatments and could die. That was much worse than rheumatoid arthritis, right? Two weeks ago, I was diagnosed with cancer. I’ve done one surgery and have one more to go tomorrow. This time tomorrow I should be cancer-free. That was the grand total of my cancer treatment — two surgeries for a curative outcome. Three years ago, I was diagnosed with rheumatoid arthritis. Two years ago, I had major surgery on my left foot because of the RA. Eighteen months ago, I underwent chemotherapy to treat the RA after developing serious complications. A few months ago, I suffered potentially life-threatening complications due to the RA. I lost an unborn baby due to autoimmunity. My life expectancy is reduced. I have chronic pain and physical limitations. The RA is progressive and degenerative. There is no cure. When I was diagnosed with cancer, no one said “at least it’s not rheumatoid arthritis.” I believe it is probably safe to say no one diagnosed with cancer has ever been told that. While I appreciate the fact that my cancer was detected early and is treatable, my situation highlights how diagnoses aren’t black and white. My RA is far more impactful than my cancer and will continue to be long after I am free of cancer. Telling me “at least it’s not cancer” demonstrates how much we stereotype illnesses. Worse, it shows how we place them in a superficial hierarchy. Saying to someone “at least it’s not …” is always going to be invalidating, and in a situation like mine, outright incorrect. The truth is illness is not a competition. No one diagnosis is ever truly “worse” than another because they all have different levels of severity and impacts. Perhaps we should acknowledge the challenges a person faces when they’re diagnosed with or managing a health condition instead of using phrases like “at least it’s not …” Let’s remove the unhelpful comparisons and instead focus on providing support. We want to hear your story. Become a Mighty contributor here . Image via Thinkstock Images

Alana Schuurs

When 'Positive' Body Image Messages Hurt People With Disabilities

I had a conversation recently with a friend about body image. It went something like this: Friend: “It’s not about how you look. It’s what you can do.” Me: “Yep.” Friend: “Physical appearance has nothing to do with ability. It’s not about how skinny you are, it’s about what you can do physically.” Me: “Yep.” I didn’t really want to say “yep.” I was absolutely cringing on the inside. On the surface, the statement my friend was making had credit – weight and physical ability are not the same thing. Just because a person is overweight, it doesn’t mean they are any less capable then the next person. While I’m not overweight, my body has limited abilities due to rheumatoid arthritis and complex regional pain syndrome. Implying that physical ability is more important than outward appearance may have merit, but not if you are living with a physical disability. I can more easily change my appearance then I can my physical functioning. This message – that ability is more important than looks – is such a double-edged sword. It frequently comes up in the media and advertising, and it is supposed to be inspiring and supportive. Yet I can’t help but feel it further marginalizes those of us living with a physical disability. Implying that ability is the most important aspect of body image only reinforces to me that I should feel bad about my body because it doesn’t work as “healthy” bodies do. This type of message does not make me feel empowered. It makes me feel more limited. I realized later that I missed an opportunity to explain this to my friend. His “inspirational” words were actually hurtful to me, although I know they were not intended that way. When faced with a similar conversation in the future, here’s how I would respond: “Appearance is one aspect of body image. Ability is another. Neither of these defines a person and neither makes them better or worse than anyone else.”

Alana Schuurs

What Rheumatoid Arthritis Feels Like for One Hour

Imagine waking up and reaching for your phone to check the time. Only you knock the phone to the floor because your hand doesn’t open. The joints are stuck. So you start trying to move the joints enough to get your hand open. After a few minutes you can at least awkwardly pick the phone up. Swiping is going to take at least another 10 minutes so you leave the phone for the moment. Imagine the frustration when even the simplest of tasks isn’t simple. Imagine stepping out of bed and you can’t feel the floor. All you can feel is the burning barbed wire in the joints in your feet as they take your weight. Then you stumble into the wall because those same joints are stuck, too. Imagine that you really need to pee so you resign yourself to crawling on your knees and elbows to bathroom because it’s quicker and less painful than trying to walk. Imagine the indignity of it. Imagine finally getting the joints moving enough so you can get dressed. You don’t buy clothes with buttons anymore because they hurt too much to do up and sometimes you couldn’t do up a button even if you wanted too. Imagine not bothering with makeup because you can’t grasp the smaller brushes or liners. Imagine putting on a pair of joggers yet again because you can’t handle the pain of wearing even low heels these days. Imagine feeling like less of a woman because of this. Imagine that you look at your schedule for the week. Yet again you have blood tests to do. The lady at the blood test place knows you by name you go so often. Then you have the specialist appointment. Physical therapy. Need to stop at the pharmacy to fill another script for a medication which may or may not help. You look at your bank account and work out how much the rheumatoid arthritis will cost you this week. You watch another couple of hundred dollars disappear from the money you put away for a holiday. You wonder what will happen when that money runs out. You wonder what holiday you would have gone on if you were well. Imagine how depressing it is when every week you have to spend time and money looking after an illness you never wanted in the first place. Imagine that you sit down for breakfast. You don’t have an appetite due to your liver not working properly but you need to have food with your medication. You count out the 8 tablets you need to take this morning. You fight a mental battle around the pain killers. The need for pain relief vs the need to protect your liver and kidneys from further damage. You resign yourself to going without. You read through the information your specialist sent you on a new clinical trial. Some medication that might be more effective than the last one. You feel your hope rising until you read the long list of possible side effects. On the TV, an ad comes on about the latest “breakthrough” for arthritis. You watch in hope but it’s nothing new. Imagine the endless cycle of hope and hopelessness an incurable disease brings. Imagine your baby son starts crying so you go to pick him up. Your left wrist explodes in pain as you lift him and you force yourself to hang on tighter so you don’t drop him. You look into his eyes and pray that they find a cure so he never has to know what it’s like to live in pain. Imagine the fear and guilt of knowing your child could develop RA too for no more reason than they have your genetics. Imagine you are the only person your age you know who has rheumatoid arthritis. Imagine how isolating that is. Imagine trying to explain what you live with and only getting blank stares in return. Imagine the pressure to be OK even when you aren’t. Imagine that the above represents one hour of your life. Now you just need to do this for the rest of your life.

Alana Schuurs

Balancing My Rheumatoid Arthritis With the Needs of My Son

I look down at my hands and I can’t quite figure out why the joints are so red and swollen today. I’ve spent the last three years managing my rheumatoid arthritis (RA), so I know how to self-manage effectively. Except I’m not managing my RA right now. I realize this as I run through my self-management checklist in my head. I forgot to take my medication this morning, and I can’t remember whether I took it yesterday. I have barely done any exercise in the last two weeks, my diet is all over the place, my sleep is broken and I haven’t even had any fresh air or sunshine in nearly a week. No wonder my joints are bad. I face the reality that I’m no longer self-managing my RA. I know why this has happened, and I’m at a loss for what to do about it. Two weeks ago I gave birth to a beautiful baby boy. He turned up early and was only a little guy, so we have faced the challenges many parents with premature babies have. We have spent as much of his life in the hospital as we have at home. We went to the emergency room two times after he became unresponsive and stopped feeding. My son has had a rough start to life. I look down at my hands and realize they’re a physical reflection of that rough start. I can’t put my needs first as I have an unwell baby to care for. Therefore, my usual self-management plan has gone out the window. The problem is, though, how do I care for him if I’m unwell? This is a conundrum I have never faced before while living with rheumatoid arthritis. How do I balance my care needs and my son’s needs? I battle in my head whether it’s selfish to try to meet my needs more. After much agonizing, I understand I can only start with what I know works. I take my medication, and I make a promise to myself that no matter how tired I am I will take it every day. I will take it because I have a son who needs a mom who can button up his clothes. I pack the nappy bag and carriage, so that after his next feed, we can go for a walk outside. I will exercise and get some fresh air because my son needs a mom who can hold him when he cries. I eat a banana rather than the prepackaged junk food in the cupboard. I will resume my low-inflammation diet because my son needs a mom who can fasten the tabs on his diaper. I realize that self-managing my RA is not about putting my needs first. It’s about ensuring my son has a mom who is well enough to meet his needs and that’s OK. Finally, I write this all down. I know there will come another day when I look down and see red, swollen joints. On that day, I will read this back and remind myself the need to self-manage my RA didn’t stop when I gave birth, rather it became more important than ever.

Alana Schuurs

Learning to Accept My Disability at Boot Camp

It matters to me that I have chronic health conditions that leave me less physically able than your average adult. Of course it does. I live every day of my life in pain and there are some things that no matter how hard I try, I just can’t make my body do. It matters that one of my health conditions is progressive and incurable. What matters most to me, though, is that it doesn’t matter to them. So who is “them?” Let me take you back a year ago when I stood awkwardly at the edge of an oval in heavy ankle bracing and compression gloves wondering what on earth I was doing there. I was surrounded by people who were visibly fit and I was visibly impaired. There were boxing gloves on the ground, which instantly made me feel nauseous as the joints in my hands were already swollen and painful. I didn’t know anyone outside of the boot camp trainer, but I was aware of people glancing sideways at me already. They were probably wondering what on earth I was doing there, too. The first activity was to jog or run around a 500-meter track, which was so far beyond my physical capability at that stage I nearly cried. I seriously debated just trying to sneak off while everyone was running to save myself any further embarrassment. Fortunately the trainer said something to me I have taken to every boot camp since: “Don’t worry about what everyone else is doing. Just keep moving.” So that’s what I did. I walked when others ran. I moved my arms but didn’t connect when we boxed. I took longer and did less than anyone else there, but I kept moving. I turned up week after week and made my body work the best it could even when that wasn’t very well. Every week I walked away proud that I had turned up and tried my hardest. Over time it dawned on me that my physical capability (or lack thereof) didn’t matter to the other boot campers. Not that they didn’t care or weren’t empathetic, but more that it had no particular impact on them. This was my first real experience of genuine acceptance and I was surprised that it came not from another person being OK with my disability, but rather from them not needing to be OK about it. What mattered was not what I did or how I did it, but rather that I persisted. A year on and I stride confidently into boot camp and see myself surrounded by friends. A year on and no one looks sideways at me even when I am a long way behind everyone else. A year on and the sight of boxing gloves doesn’t scare me at all. A year on and when in doubt, I remember to not compare myself to others and to just keep moving. Best of all, I learned that true acceptance, to me, is not when my disability matters to others, but rather when it doesn’t matter to them at all. The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. Check out our Submit a Story page for more about our submission guidelines.

Alana Schuurs

Formula Feeding and Breastfeeding With Rheumatoid Arthritis

“While formula feeding is a choice and as midwives we need to respect choices parents make, we will not be discussing formula feeding at all.” This was the message my partner and I were told when we attended our prenatal class in anticipation of our baby boy being born soon. The rest of the class had gone well up until that point, and it had been lovely to talk to the other parents in the room and prepare ourselves for our little one’s arrival. This response from the midwife running the group, though, hit me like a ton a bricks for one very important reason — she had referred to formula feeding as a “choice.” In my situation it isn’t a choice at all. A couple of months into my pregnancy, my rheumatoid arthritis began to flare again and continued to worsen. While I did my best to manage the flare without medication, it became clear that both my welfare and that of my unborn son were being put in serious danger. I had fluid building up around my heart and lungs, my blood vessels were becoming damaged from the extent of inflammation, and my joints were deforming. My body was also showing signs of premature labor, which could result in either a very premature baby or stillbirth. All in all, medication became a necessity. While I could take medication that wouldn’t put my baby at risk, it would leave me unable to breastfeed. When the risks and benefits were weighed up there was really no choice but to sacrifice breastfeeding as an option in order to treat the rheumatoid arthritis and keep me and the baby safe. I felt terrible that my autoimmunity had taken from me a part of motherhood that I had wanted to do. I felt guilty that my son would miss out on breastfeeding because my body insists on attacking itself. Being told during the class that “breast is best” and that formula feeding wouldn’t even be discussed cut through me like a knife. It made me feel like a failure as a parent before my baby is even born. However, what truly made me angry was that the reason formula feeding would not be discussed was because it was supposedly a choice. I can’t imagine that I am the only mom out there who will be or who has been unable to breastfeed due to a disability or chronic health condition. Labeling formula feeding as a choice ignores those of us who will go down this path due to factors beyond our control. By refusing to cover information on this topic, my partner and I were left less prepared for the arrival of our son, and that’s not OK. Moms who start the parenthood journey with a physical or mental health condition are already in a tough situation. We should not be made to feel worse or have information withheld from us because our circumstances are different from the mainstream. It would have made such a difference to my experience of the prenatal class if the midwife could have simply acknowledged that breastfeeding is not always a choice and been willing to answer a few questions on formula feeding. I do sincerely hope my experience isn’t reflective of what others have been through. To anyone working with an expectant mom, please don’t ever assume she has all options available to her with regards to feeding her child. Please be supportive and acknowledge that due to a range of reasons, formula feeding may not be a choice but rather a necessity. The Mighty is asking the following: Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

Alana Schuurs

Facing Rheumatoid Arthritis While Pregnant

As it gets closer to the time when you will make your appearance in the world, there are some things I would like you to know. I want you to know what a miracle you are. The doctors keep telling me that you should be impossible. That the chemo and meds should have left me infertile. That once my autoimmunity began to rise, we were told we would lose you. I want you to know that even though your dad and I had to have a difficult conversation around medical termination, we decided to fight for you for as long as you fought for yourself. We placed our trust in you rather than the doctors. I want you to know how beautiful it has been to see you on every scan, to hear your heartbeat and to feel you kick and grow. I hope you never have to understand how frightening it has been. How difficult it was when they couldn’t see your left foot on a 12-week scan, and I spent the night looking at pictures of child prostheses and tried to prepare myself. Or what it felt like to be told far too often to anticipate your loss or to accept you would probably be born severely disabled. I want you to know I cried during the 20-week scan and your dad nearly passed out. Not because any of the dire predictions made about you were true, but because you proved absolutely how right we were to fight for you. I hope you understand the decision I had to make to restart medication that would leave me unable to breastfeed you. I would happily take any pain or damage my body in order to keep you safe, but ultimately, my body began to turn against you and put my health at serious risk. The best chance for both of us to survive was to take the meds. I want you to know how sorry I am that my autoimmunity had to affect you even before you are born. I want you to know I will do what I can to protect you from the realities of my rheumatoid arthritis (RA). However, I know I can’t fully protect you. You’ll see your mom in pain and I hate that. I’m frightened it will make it hard for me to hold you or to run around with you as you grow. I dread someone will ask what’s wrong with your mom. I do believe you’ll grow up with an extra level of tolerance and compassion because of what you will witness. I know you’ll have a great role model for coping with adversity, and that is one of the few gifts my health issues can give you. I want you to know you’re so completely loved even before you’re born. I want you to know how proud I am of your fighting spirit. I promise I will always love you and fight for you my son. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines. Lead photo source : Thinkstock Images

Alana Schuurs

When I'm Called Selfish for Getting Pregnant When I Have a Disability

My friend took one look at my stomach, then stared up at me in horror. It was a friend I hadn’t seen in over a year. Not quite the response you expect when you run into an old friend. I watched her expression turn from horror to anger. Baffled, I glanced down at my stomach. Was my shirt somehow offensive? Had I dropped food all over myself? What could possibly cause such a reaction? As I looked down all I could see was my 18-weeks-in-the-making baby bump. The friend stormed over to me. “You’re pregnant?” she demanded. “Well, yeah.” I still couldn’t figure out why that would be upsetting to her. Up until then, everyone who had found out had been happy and excited for me. I was delighted by the pregnancy, especially as my health conditions, medications and going through chemotherapy had dramatically reduced my chances of getting and staying pregnant in the first place. “You are so selfish. You have rheumatoid arthritis and complex regional pain syndrome. Don’t you know they’re inheritable? How could you do that to your baby? Do you want them to be disabled? To be in pain like you?” Her words crashed over me like a ton of bricks. The friend explained she had chosen to never have children, as she has a chronic and potentially inheritable condition. I listened to her reasoning. I understood her perspective. I also understood in that moment she was probably never going to appreciate my reasons for having this child. I tried to explain anyway. I told her that if my parents had known I would end up with rheumatoid arthritis and complex regional pain syndrome, I would have still wanted them to have me. My life has value. I have value. Yes, I live with chronic pain and disability. I also have a life filled with wonderful people and experiences. I contribute to society. I am loved and love in turn. I would never deny a child those things, even it does mean they end up having to face what I’ve been through. I explained that inheriting the RA and/or CRPS is hardly a given. The reality is that no one in my immediate family has either condition, yet I ended up with both. My child may never develop either condition, or they may get both or they may have something else completely. I will love that child fiercely and with every piece of me no matter how their life turns out. They will be perfect to me no matter what hand life gives them. Finally, I told her that if my baby does end up with a disability then he/she will have best possible role model in life: me. I may struggle at times with my health conditions, but I have never been beaten. On more than one occasion I have defied the odds and achieved what I had been told was impossible for my body. My child may grow up with a disabled parent, but they will be better for it — not worse for it like my friend implied. I conceded that I did have some fears for this baby, for their health and mine, for what the future might bring. Did it make me selfish that I became pregnant despite these fears? No. I felt it made me very much like any other parent out there who worries for their child and only wants the best for them. As expected, my arguments did little to sway my friend’s mind. However, we’d both said our piece so there was nothing further to say. As she walked away though I saw her turn back for a moment and look at my growing bump. Not with horror or anger but with doubt. I looked back down at my bump with no doubt at all.