It seems these days that everyone knows someone battling an invisible illness, whether it be mental health, chronic fatigue, lupus, cancer, PANDAS, any of the hundreds of illnesses that exist today or in my case, chronic lyme disease and coinfections.
I am so incredibly blessed to have some wonderfully supportive people in my life and that I have not had to fight as much of the stigma or discrimination that many people with chronic lyme disease have, but even the closest, most supportive people, still need some reminders once in a while that we often don’t have the strength or courage to tell them in the moment.
Although I cannot speak for anybody else, please consider some of the following next time you’re dealing with someone with chronic illness, or with a stranger, as you never know what that person may be battling beneath their skin even when they look totally healthy on the outside, as I do.
Please remember, that most of us lived vast and fulfilling lives before we fell ill. We had lots of friends and a healthy social life. Myself, I worked 3 jobs, 2 of my own businesses, felt quite successful for my age, was a bit of a work-a-holic, and felt as if the possibilities for my future were endless. I worked out 6-7 days a week, meal prepped every Sunday for a healthy week ahead, and enjoyed anything outdoors and active with my friends. I played sports and dated and hosted and attended dinners and social gatherings. I sat on the board of the business association in my town and was their youngest member, was highly involved and loved every bit of giving back to my community. Having all or most of this ripped away from me was not something that I asked for, deserved or could even have imagined. It is a grief and a loss of control that my words cannot describe.
Please remember that we want with every ounce of our beings to be average again. We want to be able to exercise and travel and cook and clean and go to the grocery store without having to consider the physical and mental consequences of doing so. We want to be able to do the dishes, walk the dog, or vaccuum without having to consider whether or not that will lay us in bed for days, or make us unable to complete other tasks that are necessary to the day or to our health. We want to be able to find a simple recipe, go to the grocery store, come home, make said recipe, clean up from said recipe, and still have the energy to eat what we’ve made. And to be honest, most days I’d be happy with half of that.
Please remember that our being ill isn’t about you. And it hurts us more than it could ever hurt you. I cannot imagine how difficult it must be to watch someone you love fight chronic lyme. It must feel gut-wrenching and helpless, but unless you are the immediate care-taker, in the end you still get to live your life. Instead of getting caught up in the pain, do what you can to support them and help them get through the day. Check in, help them dole out their meds, offer them rides, help clean their house, bring them food, pick up their prescriptions, offer to take them to the grocery store or bring them groceries. Chances are they are not comfortable asking for what they need, you will need to offer it. If they do gain the courage to ask for help in any way, please do not make them feel guilty or silly for this! Trust me, the guilt and embarrassment of having to ask for help is way worse than doing the task ourselves if we could manage it. Possibly the biggest relief I’ve ever experienced is when I ask someone for help and they are just happy to do it, or even when they notice that I need help and do it without me having to ask. The weight and guilt that is lifted from my shoulders in that moment is more than I could ever ask for.
Please remember that we carry around an abundance of guilt. Guilt for what we cannot do, for what others do for us that we cannot return, for not being our best selves. If we make plans and have to cancel due to symptoms or doctors appointments, we feel guilty. If we need to ask for a favour because we are unable to do something ourselves, we feel guilty. If we cannot do something due to financial strain from being unable to work or the cost of doctors and treatments, we feel guilty and embarrassed. If you ask us to do you a favour and we are unable to, we are overwhelmed with guilt. Please remember that if we could do something for you, most of us would be so incredibly happy to do so. Especially to assist someone who does so much for us. If we say that we aren’t able to, please remember this and approach the situation with love and understanding. Know that we are not saying no out of laziness or a lack of will to help, it actually feels like a knife to the heart to have to say no and when you don’t understand this or continue to push it only jabs this knife deeper and amplifies the guilt that we’ve already bestowed upon ourselves.
Please remember that we have most likely become experts in our own bodies and illnesses. Chances are we have a team of doctors that we have fought to receive, less-so in cases of chronic lyme, however in BC we are extremely lucky to have a couple of amazing ND’s with prescribing rights helping us. You can find a lot of information online, and please research so that you can understand and assist your unwell loved ones, even take them to their appointments, however, please do not take on the role of the doctor unless you have been asked. I personally don’t mind when people send me information that they come across on lyme, I even appreciate knowing that someone was researching or thinking of me and wants to help, but not everybody feels this way, and chances are we’ve already read it, heard it, or tried it. Also, with something as complex and denied as chronic lyme there is a lot of false information out there. There are also a lot of people and businesses who will try to take advantage of the helplessness and despair of someone who is suffering with lyme disease, struggling to get help from their medical system. Please, share good information but do not push your own values or opinions onto them. It is difficult enough for us to filter through all of the information and treatment ideas to figure out what is helpful and what is a scam, as well as what will actually work for us as individuals as what works for one person, often does not work for the next. I am only in the beginning of my treatment and I have had times where I am on close to 200 pills per week. Some prescription and some herbal. Some antibiotic, some antiviral and some to support my immune system, gut, or manage symptoms. At a time of being on almost 200 per week, I had someone tell me that I wasn’t on enough supplements. He was shocked really, that I wasn’t taking more herbals. I’ve had others try to say that maybe my issues are caused by all the meds or that I shouldn’t be on antibiotics for so long. Please remember to keep your opinions to yourself or at least don’t push it! You may be doing so out of love, but healing and treatment are be very trying and overwhelming on a person, please don’t try to force your own opinions and beliefs onto us, or make us defend or validate our choices. Personally, I have a very skilled and capable ND who adjusts my treatment monthly, sometimes more, in order to make sure my body is getting what it needs. Recovery from chronic lyme and coinfections is not black and white, or a straight path, or a short road. Average length of time is 9 months to 3 years, which include a lot of trial and error, and a lot of patience, strength, and faith.
Please remember that when we say we’re okay, typically what that really means is we don’t feel like we’re in immediate risk of dying, our pain levels are maybe a 7 instead of a 10, and we want to spare you the details and ourselves the risk of looking attention-seeking or from being the person who is avoided at the supermarket. My version of ‘I’m okay’, is now significantly different than it was when I was healthy, but, like many people with chronic illnesses, I fear that if I’m honest every time someone asks me how I am, I will be taken for a hypochondriac, or as someone with a bad attitude. I don’t want to be the girl that people avoid making eye contact with because all she does is complain, and honestly, sometimes I just don’t want the sympathy or judgement that comes with telling the truth about how I am each day. This doesn’t mean that you should stop asking, please, if you care, continue, but just accept that when I say “I’m okay thanks, how are you?” it probably really means that I just don’t want to get into it all, please distract me with your own life and stories.
Please remember that social media, blogs, and the internet, is all a lot of us have. Many of us are bedridden, house-bound, or almost house-bound. Most of us are not working, and if we are, cannot do much else on top of that and what we can do needs to be reserved for the necessities like eating and cleaning. So maybe we share too much online, or spend too much time on social media, but for some of us it is all we have. We are still human. We still hold the desire to connect and communicate with other human beings. Many of us will also form deep connections with others in similar situations, that can only be formed online. These platforms also offer you a way to support your loved ones with illnesses without having to run any errands or travel. Read their blogs, like their posts, and send messages of support. Show them that you’re there, and even though you’re not in person or racing to pick up their prescription for them, you’re still thinking of them. Do this only if its true, do not bother if it’s fake. If you think they post too much or feel like its too depressing, save them the burden of your own feelings and unfollow them, they never need to know. But remind yourself that for many of them, this is their only way to connect. To reach out, to vent, to laugh, to cry, to share, and that the messages of support, love and strength from loved ones, acquaintances, and even strangers, really do mean the world to them. If you think they’re strong, tell them. If you can relate to their life or their pain or their happiness or their frustration, tell them. If you learned something from something they wrote or shared, for goodness sakes tell them!
Please remember that most of us are very aware that our lives could be cut short. Although I no longer feel that I could die within the next year like I did before finding a good doctor and starting treatment, I often wonder what people would say at my funeral. And I can’t possibly be alone in that. So this one goes for everybody, not only the people in your life with chronic illness, tell them how you feel about them. Tell them when they’ve made you happy, when they’ve made you sad. Tell them when you’ve been inspired by them or found hope or relation through them. Tell them when you think they’re strong. Tell them when they are loved. Don’t make them wonder and possibly never know.
Please remember that this is just the way it is. I don’t sit around feeling sorry for myself (usually!), and I don’t think most others with chronic illness do either. We don’t want you feeling sorry for us either. You may think that when we make posts about our lives or situations that we are complaining or sad, or you may feel sad for us. Please remember that this is just our lives. You post things about your kids or job or vacation or commute, that is your life. Just because our posts may be more about health, illness, doctors appointments, diet changes, or detoxing routines doesn’t make us sad, attention-seeking or worthy of your pity. We are sharing pieces of our lives, just like you, and we still find joy in our lives, even if it looks different than yours.