This hasn’t been an easy road to travel the past 14 years. There’s been a lot of moments I’ve wished I could get back, a lot that failed to go as planned. I’ve faced a lot of disappointments and seen a lot in my life change.

I’ve learned that I’m not alone. I’ve found community and people who can empathize with what I’m going through. I’ve had a whole new world open up to me, a world full of people who aren’t scared away by the “sick girl”.

I’ve learned that I have limits. I’m not saying I’m perfect – I am constantly pushing to see how far my limits can go. However, I’ve learned that whether I accept them or not,I have physical limitations on myself.

I’ve learned how to say NO. I’ve learned not to feel so guilty when I can’t do something. I’m learning how to take care of myself.

I’ve learned to how to grieve. I’ve had to give up on dreams and plans. I’ve had to watch my former self slip away. I’ve lost friends both because of my illness and to theirs. I’ve had to learn to let go, to cry, to mourn, to face what is lost and move on from there.

I’ve learned how to be flexible. Nothing about life with a chronic illness is predictable. As much as I try to stick to a normal routine with work and school, I can’t always do that, so adaptation is necessary. Gone are the days of my planned out to the minute day book. Instead, I try to keep my schedule as flexible as possible. I move what I can if my body tells me something has to give and focus on doing what cannot be moved.

I’ve learned how to have hope. Hope is essential for survival. I’ve learned to look for hope, to find it in small bits of progress, in good days, in changed attitudes, in medical developements. Without hope, there is no survival.

I’ve learned how to fight for myself. There isn’t an army of people that will fight for me, to speak up and make sure I’m heard, to ensure I get the treatment I need, to coordinate my care. It’s not my doctors job. There’s no one I can hire to do that. I’ve had to become organized and vocal and not afraid to stand up for myself.

I’ve learned how to be brave and scared at the same time. Life with chronic illness can be terrifying. It also requires you to be brave at the same time. You have to be brave when fighting for yourself. You need to be brave when you have little support or when your support needs your support. I never thought I could swallow my fears and stand up for. Yself when I was shaking and scared, but I’ve found that necessity can breed bravery.

I’ve learned to live in the moment. Chronic illness means no certain future. I’ve learned to put the planner down ( well, kind of, I still need it so I know where I’m supposed to be) and just go with the flow. If I want to go out, then I’m going out because if I make plans, there’s no guarantees I’ll be able to keep them. Living in the moment gives me some control and allows me to still do some of what I want.

I’ve learned how to love myself. I’ve learned how to be patient and forgiving with myself. I’ve become more accepting of myself, illness, flaws and all.

I’ve learned that I am loveable and capable of love in return. I’ve learned that despite my illness, despite what I sometimes see as a giant flaw, people can and do still love me. There are people who are not scared off by me being sick. I’ve learned that even though it is scary and leaves me vulnerable, I am capable of love in return. Relationships are possible.

I’ve learned that I am shaped by my disease(s) and experience. They will not define me.

Article written by staff writer, Agnes Reis

Agnes is a nursing student in Minnesota. She was diagnosed with CFIDs in 1999 followed by fibromyalgia the following year, along with lifelong allergies, asthma and migraines. She can be found at brigid22.wordpress.com or @brigid22 on twitter, but cautions twitter followers that there’s a heavy dose of sports and nursing along with the spoons.