These are some things that I’ve learned over the course of this illness, and have seen in friends and family battling the same disease. It’s crazy how real these seven points are for people (besides myself) with chronic illnesses, whether I’m talking to my mom who has dealt with disease for more than 30 years, or a couple people I’ve been talking to who have just developed a disease. A lot of people have a lot of questions so hopefully I addressed each of them in these points, and that can make understanding the disease a little easier! If you are wondering more what the disease includes (symptoms, medicines, treatment, statistics, etc.) feel free to do some research–there are more articles and more awareness being spread now more than ever.
1. Ask the right questions
If you ask me how I am feeling or how I am doing, I will most likely respond with “fine” or “Not the best” because my new normal is different than your normal, and if you haven’t been around me a whole lot, it’s pretty hard to describe exactly how I am feeling. Also, because us “lymies” are most likely constantly in some kind of pain, this question doesn’t go to far in actually understanding what’s going on and will usually always get a generic answer. Try questions like: How is the pain level today? How are you feeling emotionally? What symptom is bothering you most today?
If you don’t understand, just ask. Even if you bombard us with questions, we now know that you are genuinely interested in how we feel and what’s going on.
2. Don’t assume
My pain level and symptoms actually come in waves throughout the day, so how I feel is usually constantly changing. Also, people with chronic pain and invisible illnesses are incredible actors!! This is especially true if you haven’t been around to walk through the disease with us… we feel more comfortable letting our real pain show around those who have already seen us in it a thousand times, i.e. our families and people really, really close to us. Yes, we are good at hiding, and yes, many times even with our close friends. How we look can say nothing for how we feel. Thank you for saying I look well because yes, a lot of days I don’t have energy to put on makeup or don’t feel well enough to switch from sweatpants to jeans, but please don’t assume that I’m feeling a lot better or my sickness is gone. Also, getting out of the house or traveling does not mean our illness has gone away…we’ve just taken it with us!
Even though you might be trying to be sincere, please do not say you know exactly how we feel or you know how the exact pain feels like. You might know a lot about what it feels like, but each Lyme case is different and each person is different, therefore, it’s not a safe assumption that because myself and someone else have Lyme that we are both experiencing the exact same thing and feeling the exact same way. It’s also different for those who just acquired the disease and for those who have had it for several years and are in “late-stage.”
Since a lot of us aren’t well enough to go to work or school, we usually spend most of the day sitting in bed or on the couch. I know it might be easy to say “you get to stay home and relax every day, how nice!” but that’s not the case. We would give anything to just be back at work or in school or taking care of kids or spending way more time with those we love!
3. Please don’t treat us like “disease” is our first name
Believe me, we already feel like it is. It now impacts every area of our life so it’s a simple task for us to think others see that and know us by that as well. I’ve sat through meals or gatherings with friends where I came close to fainting or felt a migraine starting and just continued to sit there because I didn’t want to be “that girl,” and I know a lot of people who can say the same because to us, just the fact that we have a disease is burden enough for you all, or at least we feel that way. While we equally want you to recognize and understand that we are in a difficult battle, we need lots of reminders that you see us for all the qualities that made you first fall in love with us as your friend, girlfriend/boyfriend, wife/husband, etc. before this disease hit. Which leads me to my next point.
4. We need a lot of reminders
This feels like a hurricane has rocked our world, and then after the initial shock we wake up and are reminded the hurricane still has us in its tight hold. It feels like our whole reality has been shifted, well, …because it has….and it is SO easy to allow ourselves to get lost in everything we feel physically and emotionally. We are probably constantly battling our own thoughts, and once we’ve gotten hold of a strong piece of positivity or truth, a worse symptom will hit, a test result will come back, a doctor will respond, and all of a sudden it’s lost. Please, remind us of the truth, remind us how powerful God is, remind us what we mean to you, send us encouraging scripture, or send us notes/care packages. This is a really, really, really long journey for us, and if we are no longer the ones playing in the game with you, it’s easy to feel discouraged while making our home on the bench watching all of you play. Most likely we spend a lot of time by ourselves and no longer have the people we once did to just speak life into us each day. Our sense of community is gone.
….Also….isn’t this what the Christian community is intended for in the first place? To encourage each other with reminders of God’s truth?
5. Be there
When you’re delivered an invisible illness like this, loneliness automatically comes within the package. As long as you’re going through something different than most of the people around you, you’re going to feel at least a little lonely. Yes, you won’t understand us fully because you aren’t in it yourselves…and we wouldn’t want you to be. And this applies to everyone though–we’ll never fully understand someone unless we have walked in their shoes.
To be loved best is to be seen and fully known. How can we know how to love someone best if we have not fully seen them and their situation? The more we do what we can to understand each other, the more we will know how to love them personally. I’ve known this to be a basic Relationships 101 truth, no matter the nature of the relationship. This is key to understand how/why we respond or feel while we’re in this battle.
If you want to support us, then please show us! This is “go time” for friendships and “make or break” times for relationships. This is the time for you to do something instead of just telling us you care. Yes, we know you are busy. We really do. And we also know that us having to cancel plans (or never make them in the first place) is annoying, but believe me we feel incredibly awful for it as well. Maybe think of ways you can show the best support for your friend, or what they need the most. Our friends and family are our biggest supporters! You all make this really dark time a little brighter.
6. This is really tiring
Have you heard the spoons analogy? A woman came up with this analogy a while back and since then it’s traveled the internet and has been used by a lot of people to help describe their invisible illness. The spoons represent energy. When I wake up, I use one spoon to go to the kitchen and take all my pills. Another spoon is used for making breakfast. Today I need to do laundry, so two spoons are used for that. Taking a shower is another spoon. If I want to go out to dinner with friends later I need to conserve the spoons I have for that, so I’ll skip on folding my laundry today and instead lie down for a few hours. I use four spoons to go out and go to dinner. After dinner my friends want to go to a movie, but I’ve ran out of spoons and I need to lie down again , so it’ll have to be another time. People in chronic pain have limits on what they can do, which is frustrating and discouraging for us each time. Some days I can run to the store and back while keeping the pain at bay, and others I’m crying because my arms hurt too much to wash my hair or it takes me a whole three minutes to walk up 14 stairs because I’m too tired. This is not like having the flu for a couple days, but instead, waking up feeling like you have the flu over and over again. And it’s tiring and discouraging that our reality is having the pain never. go. away. At least not for now.
7. Tell us your success stories
If you, a friend, or colleague has survived Lyme, tell us! We love to hear success stories and can use all the encouragement we can get! I’ve found the stories of Yolanda Foster and Suzie Larson to be very encouraging because they’ve used their stage to help others. Since learning that I have this, I’ve discovered so many people who are going through or have gone through it as well, many including friends and acquaintances I never would’ve guessed. Hearing about someone who has gone through treatment and is living life normally again sounds like a dream to us, and reminds us we can keep fighting.
These points can hopefully, if anything, simply help spread awareness and understanding. My heart goes out to anyone who is enduring a disease like this, no matter the intensity of it, and hopefully I’ve represented the words and thoughts of those people well.