This is only the first round of questions, if yours doesn’t get answered or something new pops up shoot me a message or an e-mail at firstname.lastname@example.org and I’ll make sure I get to it next time! Thanks to everyone who sent in questions, I’m always open to raising awareness.
1. How old were you when you first got sick? – Megan Ariel Roberts
I started to get sick when I was 11 or 12, it started off with pain that was much like typical appendicitis. I went through three years of doctors questioning if they should perform surgery before a doctor at SickKids took out my appendix and found that it was infected, and filled with tumors. Turns out my body would “purge” out the infection whenever I would go through a flare, which is why doctors had such a hard time finding a concrete diagnosis. However my first chronic disease diagnosis (biliary dykinesia) came a few months later in July 2010 when we learned my gall bladder was as useless as pie.
2. How do you manage to always stay so amazingly positive? – Emily Cardinal Bero
That question in itself is a compliment, thank you! But I have to tell you that it is a compliment I can’t take. I’m not always positive, and to be honest with you I feel like I rarely am–I prefer to take the realist perspective: my reality sucks, yes but it’s easier to accept that and live with it than to fight my conscience and constantly try to convince myself that all is great and dandy. This world isn’t made for the faint of heart, and I know you know that there are a lot of bad things that can happen to good people. The best way I can stay “positive” is to constantly remind myself of the beauty around me, and the beauty that still remains even if it’s in the tiniest most simplest thing.
3. What’s the best life lesson you’ve learned from having a chronic illness? – Ari Dennis
There’s so many things I could list off, but I think the best lesson I’m still trying to learn is to not compare myself to others. Every day I remind myself not to look at what others have, unless I’m only checking to make sure that they have enough. I’m a perfectionist, I’ve always made sure I did things beyond what I considered my best ability. When I started to get sick and realized I needed to slow down, and when the time came for me to have to take time off of school I was devastated but I realized I was devastated because everyone around me was going to school and I wasn’t. I still have to remind myself that just because I’m travelling a different road doesn’t mean I wont get there. I will get where I’m meant to be, even if I have to take a different path.
4. What is your greatest desire? – Helena Summer
I like this question because there’s no materialistic answer to it, just a soulful one. I think my greatest desire is to leave this world better than when I entered it, even if it’s only by impacting one life or one aspect of the world I would be content. I know I haven’t even seen a fraction of this world, but from what I have seen I know there is so much hurting, and so much need for healing and we as humans are notorious for waiting for “someone” to change the negative. If I can stop one person from hurting in the way I have, then I am satisfied.
5. What are some daily tasks that are difficult to cope with, or that you miss being able to do? How do you manage tasks that you aren’t able to do? – Janelle I
For one, I miss dancing; I think that’s a given though. I miss the normal things in life, I miss being able to go to school, I miss being able to hold down a job, I miss being able to get through an entire week of whatever I was doing without having to take a day off because I was too exhausted, or too sick, or in too much pain. It seems to be a common theme among people that those of us with chronic “invisible” illnesses are lazy, but just because you can’t see my disability doesn’t mean that I’m not struggling. My body uses up energy just to keep myself upright and functioning, the energy that you use to get through an 8 hour work day goes into giving myself a shower. I’m not asking for grace, or for sympathy and believe it or not I’m not exaggerating. This is an exhausting life, add in multiple chronic illnesses to it and it’s even more exhausting. I really miss being a student, if I was able to get through school this would have been my first year out in the workforce and instead I am even more dependent on my family and friends than I was before. When I’m at my sickest unable to go to school or work, I lose my sense of purpose and I struggle to understand what I’m here for. I know that’s dark, but it’s honest.
I haven’t quite figured out the right way to cope with the things that I can’t do, so don’t take advice from me. I have many ways of coping with it, it usually involves a lot of crying, a lot of cursing, a lot of self ridicule, I tear myself down, I blame myself, and it is a whole bunch of negative. Eventually, I forgive myself and move forward without actually working through those emotions. Truth be told, the key is in acceptance. We need to learn to accept that we all have different ways of doing things and different abilities, just like some people are right handed and some are left handed; there is no right or wrong way of getting things done. But in gaining acceptance, we need to learn that it’s okay to ask for help. Society has this whole stigma created that asking for help is equivalent to weakness when it’s not weakness, it’s strategy. With my nerve disease I am unable to shower or dress myself without assistance, and I frequently rely on others for help with that. When I’m unable to get to appointments on my own, or when something frightens me and I could use a hand to hold I reach out to my family and friends for that support. Quite honestly, it’s refreshing. It’s refreshing and a nice reminder as to whos there when you really need them. The bottom line is that I’m working really hard on not getting angry at myself for not being able to do some things, or having to do some things differently. I hope that one day this world will figure out how to be more accepting toward that.
6. When you’re working with (or hanging out with) sick kids, how does your illness affect your relationships with them? (If at all!) 💜 – Megan Ariel Roberts
To be honest with you for the first time in any situation, my illness brings our relationship closer. I’m fortunate to be able to have a phone, and my own social media accounts but younger kids even if they do participate on social media aren’t familiar with how they can open up alleys and doors for them to connect with other kids in similar situations. So when another child sees that I have a line just like they do, or that I have to take a medication just like they do, or that I’m hooked up to an IV just like they are it’s almost like a whole new world for them.
Most times it can help me appreciate where I am in my illness, I’ve seen kids that are struggling with ailments that are far more difficult and I’ve seen kids who are going through similar things; it’s always a nice reminder to be humble and grateful in where you are and also a reminder of how far you’ve come. It’s one of my favourite things because it’s reminds me that beautiful things can come out of the ugly, just like being sick. One of the parents always says to me that everything happens for a reason, the connection that I have with her and her daughter has brought me so much joy and while I despise the fact that our illnesses exist…I’m so happy they brought us together.
Realistically, I have to be careful. Many of the children I get to know are immune comprimised like myself, so I need to not only protect myself and my immune system but I need to be cautious in who I spend my time with and the order in which I do so. For example: If I was visiting a child going through chemotherapy with a low immune system, they would likely be first on my list and then I could visit a child who was inpatient for an infection to avoid cross contamination. It involves a lot of sanitizing, a lot of gowning and gloving up, and often times multiple changes of clothes but I wouldn’t change it for the world. It’s one of the things that keeps me going, and so long as we are both safe…I would jump any hurdle to be able to make it happen.