10 Things I've Learned From Being Sick for 10 Years

I frequently talk to people who are new to the Lyme disease/chronic community and am often asked what to expect, what will happen or if I have any “words of wisdom.” After being sick for the past 10 years I have learned certain things along the way that will hopefully help others along their journey. Everyone has a different experience of course, but I’ve found that some things never change, no matter how many times you come out of remission.

collage of pictures including a woman raising awareness for lyme disease and her medications

1. Forgive yourself.

There will be times you will have to go back on plans you’ve made and you will feel terrible about it. It could be as little as making plans to grab lunch over the weekend or as big as standing outside theatre doors in NYC 10 minutes before the show starts and needing to leave (this is what happened to me about two weeks ago and it was the worst day ever). Your life is unpredictable and your body is constantly in flux – be gentle with how you treat yourself emotionally. You can be doing every single thing right when it comes to physical treatment, but if you don’t learn to love yourself and forgive yourself for those tough calls on when you need to take a time out, then you’re not fully treating your illness.

2. Learn to say “no.”

This is so important. You don’t owe anyone anything. Just because you’re having a good day doesn’t mean you have to spend it making your rounds. You have so many bad days that you deserve to spend your good ones doing whatever it is that makes you happy. You earned those days – take them.

3. You might lose a lot of people.

The obvious losses are the friends you had when you were healthy. You cannot keep up your old lifestyle when you have a chronic illness and most of your old friends will at least try to stay in your life, but may fall away as your lifestyles continue to grow apart. It took me seven years to finish college because of my Lyme disease and with each new year, friends have come and gone with each group, creating a bigger age gap. Now all my friends are living the college life, going out partying and drinking, and I just can’t do it anymore. Not just because I’m sick and don’t leave the house, but because I just don’t want to. I’ve lost boyfriends because they didn’t understand how to be with me or how to love someone who was so sick, so they avoided me like the plague I claimed to be possessed by. I’ve lost some great co-workers because I can no longer get to my job anymore. I’ve lost beloved family doctors because they didn’t believe me when I said I was ill. I’ve lost the respect of a great deal of people because they think my being home sick is an act of laziness or a cry for attention. This disease has taken most people out of my life and I’ve had to learn that those who truly belong in it will make every effort to stay.

4. You will find comfort in the kindness of strangers.

I have found some amazing individuals through Lyme support groups. We trade remedies, swap stories, offer guidance to one another and answer each other’s questions. This wonderful population knows my struggles and understands my grievances. They too have walked this path and feel the sense of loss that I have: loss of support, loss of physical and mental abilities and general loss of power, just to name a few. These are the people who are up all night long fighting the same battles, the people who can talk you down when you’re at your breaking point because they too have stood in that same spot. They have home remedies and life hacks to make your life a little easier and less painful. They have tried the same medications and have felt the same side effects. Consider this your chronic clan, your sickness society and your disease domestic – these are your people and your second family.

5. Find what makes you happy and turn it into a ritual.

In the very beginning of my journey I was up every night terrified to fall asleep because I was afraid I wouldn’t wake up the next day. My mind and heart would race and I had no idea what was wrong with me. I didn’t know what to do with myself. I found comfort in the things that made me happy: comedy and crafting. I would have comedies on repeat for hours upon hours as I would create little gifts for people. In my head, the laughter made me happy and my creating something for someone I loved would make them happy (which in turn would make me happy). I discovered The Big Bang Theory, Family Guy, Kevin Hart and loved anything with my personal idol, Melissa McCarthy. I think I could single-handedly keep Netflix in business based on how many times I’ve had some sort of laughter-inducing video on there. I found that when I had something funny playing on my iPad I was finally able to get myself in a place where I could lie my head down and catch a nap. These naps became longer and longer with each new day, to the point where I could finally get a (somewhat) full night’s sleep. It took some trial and error but I’ve had the same routine for the last several years and it has not let me down yet. I craft when I can in the daytime (I enjoy making greeting cards) and I have Netflix going with something that makes me feel good. At night, I talk to my guardian angels above and pray I will grow stronger and close my eyes as whatever is playing on my tablet slowly fades out. This is my happy place. Everyone is different. The trick is to find whatever it is that makes you get out of your own head, stop being afraid of the unknown and focus on grounding yourself. Maybe you like to read, watch television, take long baths, pray, meditate or roll around in a field of puppies (one can dream, right?). Whatever it is, do it as often as you can. The longer you can stay in your positive space, the less time you spend in a negative one. Laughter is definitely the best medicine in my experience, but you might need a different anecdote.

6. You will never be more organized in your life.

As a chronic warrior you have far too many things to keep track of on a day-to-day basis. As someone with no energy whatsoever, I have to plan my entire day around how much energy I have when I wake up. Do I have the energy to shower, to prepare my meals, to walk and feed the dogs, to check the mail, etc. These are all important factors in planning my day. I always put my dogs first. If they’re happy and healthy then I’ll figure myself out later. I have to time out when I eat so I can take my medicines and leave enough time in between to take Tylenol if needed. Lord help me if I have to leave the house because then I have to make myself look like a person and then take all my pills with me. I can’t take certain meds too close together or they will either cancel each other out or cause a bad reaction. I have to allow time for me to feel the side effects of certain medications; if I have to take certain medicines that make me nauseous I’m not going to want to do anything soon thereafter, but if I need to take them with food then I have to be prepared for the likely scenario that I will throw up. If I take my nighttime pills too early I will either wake up in the middle of the night or I will miss my drowsy window entirely and will be up until morning. I have so many lists and planners that have my days timed perfectly and yet no matter how well you plan, life happens. You could be so sick that day you can’t get out of bed until 4:00 in the afternoon. Not only does this throw all medication timing off but you will have missed meals that are necessary to go with them. Timing is everything with a chronic illness, and the longer you’re sick the more you learn that you are both a pro and an amateur.

7. You will get an unofficial degree in Pharmacology.

Chronic patients have a colossal amount of pills, jars, bottles and supplements and you need to know the dosage, when to take it, what you can and cannot take it with and the possible side effects. You’ve been down this road so many times you can go into your doctor’s office and know exactly what you will wind up leaving with. You know every drug interaction, you know what should be taken on an empty stomach or with food, you know what drugs don’t sit quite right with you and you know drugs similar to it that can cause the same effects. You’ve tried every herbal remedy out there, you know which ones are bogus and which are lifesavers. You’ve taken so many pills over the course of your life that when you get a headache now it becomes second nature to just ride it out instead of having to swallow more medication. You know which drugs will make you more vulnerable to certain stimuli – when you cannot be in the sun, when you need to avoid certain food groups, when you cannot be in extremely hot/cold climates because the temp will send your body into a tailspin. You are a seasoned professional when it comes to medication – now if they could just send you the degree in the mail you’d be all set.

8. Some people will never fully “get it” and that’s OK.

It is important to raise awareness for all types of chronic illness. I, for one, try as best I can to promote Lyme awareness because of how susceptible everyone is to a tick bite. I have tried on countless occasions to describe what my life is like when I am sick and actively trying to treat it, and while some try to understand, they just don’t get it. Not everyone is going to understand your struggle and that is OK. The important difference is even though some people will never comprehend what is going on, if they recognize the illness and empathize with your feelings you’re headed in the right direction. The goal is to raise enough awareness to create movement on the government level to fund research so that we may one day be free of these spirochete shackles. If your goal is only to make everyone feel your pain, you’re fighting an endless battle.

9. It’s OK to be scared.

This is self-explanatory. No matter how long you fight, there is still no cure. It’s OK to be afraid. Recognize your feelings and embrace them. The only way you will lose the fear is by keeping it buried beneath the surface. No person should fight alone and they don’t have to. There is a tremendous support system on the internet and thousands have come before you walking this very same road. You are not alone, you are loved and you will get through this difficult time to better days ahead. I can say this with utmost confidence because not only have I been on the ledge, I have jumped hoping for a “way out,” and thankfully someone caught me before I hit the ground. I have been at my very worst and have come out on the other side. There will always be those days where you wish you could flip the switch and end it altogether, but I promise a permanent solution to a temporary problem is not the answer. Talk to people. Talk to those you love, those you don’t know but understand or those who have been there before. Someone is always listening and will always be there, just maybe not in the ways you’d expect.

10. You will appreciate being alive.

If being sick has taught me anything, it is learning to appreciate everything life has to offer. I take more risks, I have fewer regrets and I appreciate the natural beauty that is the simpler things in life. I love fresh air, flowers, going for walks, human interaction – I could go on and on. Life is a beautiful gift and if you’re reading this you are lucky to be alive. Go enjoy it in whatever capacity you are able and turn your face towards the sun. Take long, deep breaths, make time for the things that make you happy, help those in need because you know what it’s like to be without and do everything you can to embrace this moment because you never know how many more you are going to get.

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