An open letter to anyone who loves someone with a chronic illness.

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.

Why your sick friends don’t “just call”.

Whenever I run into friends and they ask me about lyme and how I’m doing with it all, they will say “well just call me!” or “why haven’t you called me?”, “I’ll get you out of the house, I’ll come visit!”.

We don’t call you because on our bad days we can’t even fathom holding a conversation. Some people with late stage lyme disease can’t even remember how to dial the phone, let alone call you themselves. I am a lucky one who can still do daily tasks and dial a phone, but on my bad days I’m much too sick to try to hold a conversation.

We don’t call you because it’s really hard to make plans when we don’t know how we’ll feel next week, or tomorrow, or 3 hours from now and we don’t want to let you down. Also, if I can barely walk, or am struggling to hold a conversation, I don’t want to be seen that vulnerable.

We don’t call you because we don’t know what to say. Our days are spent sleeping, working if we’re lucky, or with doctors, medication schedules, treatments, rest periods, and symptom management. We know that just because our lives have had to slow down doesn’t mean yours has. We don’t want to bog you down or scare you off with our current state, and when you ask us how we are, we’re tired of pretending we’re okay.

We don’t call you because when we do have the energy to talk, we’re thinking about how to get the week’s worth of dishes and laundry and house work done that has piled up over all of the days we were unwell. We know we need to do it because we don’t know when we’ll be physically well enough to do it again. We’re making soup for the week because we know there will be days we can barely eat, let alone cook, and if we don’t do it now we might not get the chance. We’re preparing, because we know our good days are limited and important, and we don’t know when we’ll feel well enough to go to the grocery store again.

We don’t call because we don’t want to burden you. We’re happy that you’re happy and healthy, but sometimes it hurts too much to see life moving forward for everyone else when we’re drowning in darkness.

Just because we don’t call you doesn’t mean we don’t need you. We need you to check in sometimes, to make plans, knowing that we may have to cancel at the last minute even though we hope with everything we have that we don’t. We need you to come by, and when you do, our houses will be messy, and we will be embarrassed. We will not be near the host or hostess that we’d like to be, and we will feel guilty for that. We need you to come by anyways, with no expectations.

I have one friend who still visits regularly, and a couple others who check in or send food. My good days are still worse than my old bad days, but they’re good nonetheless and they seem to be coming more regularly in the last few days. I know I can’t expect those to last, as this disease is very up and down, but when they do come I hold on tight and enjoy and appreciate them. It’s on those days that I can write, go to dinner, maybe risk a short walk. Catch up on my cleaning and cooking. Sometimes I can even read a book, or go to the grocery store without the fear of collapsing. But if I am on a roll and do too much I pay for it the next several days. On the weekend I slept all day, walked two blocks into town for dinner and a drink, and slept all the next day to pay for it. But it was worth it to have one evening that felt normal. To be able to walk that few blocks into town and have dinner in a noisy restaurant was something to be celebrated.

I long for the days when I could be up at 6am, working out, meal prepping, working 3 jobs, sitting on different volunteer committees. I long for the days when I was ABLE. When I didn’t have to think about whether or not I could handle going to the grocery store that day, when I didn’t have to schedule a lot of rest time so that I’m able to work one job. When I didn’t have to consider whether the noise at a party or a restaurant would cause my central nervous system to flare up, possibly sending me to the ER. I long for the days when I could walk my dog.

At the same time I’m still so grateful. I am grateful for the days, like today, when my head is clear and I can write. I am grateful that I am not bedridden. That I can still work. That my grandma walks my dog for me. That I’ve met so many incredible people who are all living with lyme disease and helping me to navigate this journey. That I have family nearby to help me and support me. That I have a couple of friends who care enough to check in or bring food. That I have one friend who spends countless hours with me in our sweatpants watching netflix when its all I can do, and who forces me out of the house when I’m able, even if its just for a drive. Who walks around the mall with me when I feel like I’m walking so fast but really am walking worse than a 90 year old arthritic woman. Who holds my hand while I sob in the moments or days that I can’t take it anymore.

I know that I have a long road ahead of me. But I’ve had a few clearer days recently and it makes me feel like I’m starting to see the light. I know that its too soon to say that and that I can’t count on it to last, because worse days may come before the good, but I know that I am in good hands and will one day get healthy again. A year sounds like a long time, and many people have to have several years of treatment before they’re better, but I spent the last year only getting sicker and sicker with no answers or end in sight. At least now we know some of what we’re fighting. We know the road may take some turns but we’re on the right path. And whether they last or not, I am going to hold on tight to these good days and appreciate them for everything they’re worth.

How to get medical help with the red-flag of mental illness in your file

It’s no secret that I have become friends with my mental illnesses. I have denied them, hid them, fought them, accepted them, lived with them, shared them and embraced them. I have learned the things that I need to do in order for them to be my friend rather than my enemy. We now work together to allow me to live a happy, thriving life, and I use them to help so many other people in the process. They are a part of me just like any other part of me. I am comfortable with them and stronger than them; wiser than them, and they rarely try to fight me anymore.

Which is why I find the way that I am treated in the emergency room so offensive.

Someone warned me recently that if the ER sends me for a psychiatric evaluation it will put a big red flag in my chart. I told her, “Don’t worry. That big red flag has been in my chart for as long as I can remember. I’m used to it.”

On August 6th I collapsed in my home where I live alone. Thankfully I didn’t loose consciousness and was able to protect my head from slamming into the hard tile floor. My parents were out of town so I called my 77 year old grandma, sobbing. She rushed to my home only a few blocks from hers, and luckily she has a key. She put me over her back and practically carried me to the car where she took me to Delta Hospital Emergency.

I’m sure its no surprise to anyone that its not easy for a 77 year old woman to carry most of the weight of a 25 year old, so when we arrived she made me wait at the car while she got me a wheel chair, scared that I might collapse again and bring her down with me. This seems to be a common symptom for me these days – my knees or ankles giving out – usually I am able to catch myself with my other leg or grab onto something for support but once in a while I can’t, or both legs go out at the same time.

She wheeled me into the ER, got me checked in, sat with me a bit, and then left to get a newspaper. Of course the moment she left was the moment that the nurse began calling my name to take me in from the waiting room.

“Denise Askin… Denise Askin!?” the nurse kept calling as I waved my arms from the wheelchair.

“I’m over here,” I kept responding.

“DENISE ASKIN!!!” she shouts.

“I’m in a wheelchair,” I call back while flailing my arms in hopes she will come to help me.

When she finally approaches me she looks at me with disgust and without trying to hide the disgust or annoyance in her voice she asks me, “Well can you walk?!”

“Uh, umm, uh,” I stutter, “well, umm, I’m here because I collapsed.”

“Well did you walk to the car to get here?” she practically spits at me.

“Uhhh with a lot of help,” I whisper in shock.

“Well come on then!”

I think shes going to help me up, maybe take my arm to steady me. Instead she turns and walks toward the doors, me shuffling unsteadily behind her. As she approaches the doors, me struggling 10 steps behind,  she turns to tell me to hurry up.

Embarrassed, degraded, angry and sad, I sit in the line of chairs where you wait to be seen by a doctor. Over 3 hours go by without a doctor or a nurse even speaking to me. This is fine, I understand I was not high priority, I was managing my pain and sitting quietly with my grandma. I wasn’t gushing blood or on my death bed. I understood this and continued to wait patiently, grateful for my cell phone distraction and the company of my grandma.

Eventually I decided to try to walk and get a cup of water. I shuffle to the nurses station and begin to ask a nurse where the water station was. “Are you Denise Askin?” she asks.

“Yes.”

“Here, I have your ativan for you.”

I look in her little paper cup and see a large, white ativan that she seems to think I need to take. I recognise it with fear, as I’ve only ever taken that large of dose once before at the dentist and it made me so high that I had to phone back the next day to make sure I paid my bill.

“I didn’t ask for ativan,” I tell her, confused.

“The doctor wants you to take it. Just put it under your tongue,” she responds matter-of-factly.

At this point I’m very confused as to why this is being given to me, and I ask her why the doctor wants me to take it and how I can possibly be prescribed ativan without any doctor or nurse even speaking to me first. Is that even legal? I don’t think it could possibly be ethical. Then another nurse comes up behind me, “Denise? We’re ready to run some tests on you,” then to the first nurse, “did you give her her ativan?”.

“She’s refusing to take it.” the nurse replies.

Great. Now I’m crazy and defiant.

The second nurse encourages me to take the pill and still cannot tell me why or how I’ve been prescribed it in the first place. “Do I look like I’m having a panic attack to you?” I finally ask.

“Well, no…” she responds.

“Great. Then if I start to have a panic attack I’ll take it. But for now I am not anxious and I’d like to be able to explain to the doctor what’s wrong before being drugged.”

And guess what – I never did have a panic attack or get anxious during this visit, and my blood tests showed that my eosinophil levels were abnormally high. This is the white blood cell that fights infection. Imagine that. Someone with a history of mental illness coming to the hospital for something besides mental illness. Crazy right? Unfortunately, when you have that big red flag in your file, it is generally assumed that every time you walk into the hospital or doctors office, there is nothing wrong in your body and everything wrong in your head. You will never be treated with the same dignity and respect as someone who does not have that big red flag. Anyone with that big red flag will always have to fight harder for the same care and respect that someone without it receives. This is not just my opinion, ask anybody else who has it and I’m sure they’ll tell you the same – I know I’ve asked many people with history of mental illness and they’ve all said the same to me.

 

Tuesday I started to feel confused. Then I lost my ability to speak. I could see the words right there in the front of my mind, but I could not for the life of me figure out how to get those words from my brain to my mouth. And then I got a sharp shooting pain through the left side of my head and my legs went out from underneath me. Suddenly I was on the floor.

On our way to the emergency room I wrote on a napkin to my mom, “Do not mention Lyme”. Because my mom has sat in on Lyme support group meetings with me and also is in my online support group, she has seen everybody else’s warnings to not mention Lyme disease in Canada to an MD or in an emergency room because all they will do is send you for a psychiatric evaluation. Unfortunately my dad was not aware of this, and when the nurse was in asking questions he did what anyone unknowingly would have done, and said, “but I thought it was Lyme disease?”. And that was that. The nurse went on to explain that Lyme disease does not exist here, and I wrote down on a piece of paper (still unable to verbalise), “Canada does not recognise chronic or late stage Lyme.” The nurse read this and went on to tell us that the US doesn’t recognise it either. I know is not true because that is where my blood gets sent to and I have met several people through support groups who go to the states for their treatment. However, I still couldn’t speak and I didn’t have the energy to try to argue it so I let her continue to tell me that they would do their best to help with the immediate situation but would not be getting to the core of what’s deteriorating my body and brain.

After about 4 frustrating hours of trying to be able to get the words from my brain to come out of my mouth, my pain started to flare up. It started in my left knee, then trailed down my leg and into my foot, spreading through each of my joints and into my eyes. Then all of a sudden my head, neck, eyes, and ear pain shot through the roof. I went from calmly laying in the hospital bed to sobbing and kicking because the pain was so intense. I’m unsure of how long this went on for before suddenly I felt something in my head clear and I said “I think I can speak again,” and just like that the words didn’t get trapped in the front of my brain anymore and instead flowed freely out of my mouth like I had expected them to all along. So now my inability to verbalise was gone, replaced with unbearable pain.

The next bit is a blur and I’m really unsure of how much time passed but they hooked me up to an IV and filled me with fluid and pain killers. I’m not sure how long I slept for, it may have only been 20 minutes, but it was the best rest I’ve had in a significantly long time. It wasn’t until I had the relief from the IV pain killers that I realised just how much pain I’ve been living with for so long. I think after a while it just becomes the norm and maybe we aren’t always aware of just how much pain our bodies are trying to function with until its gone.

Sometime during my rest the resident who had been tending to me came in with a doctor who I hadn’t seen before. This doctor then told me that there was nothing wrong with me physically, and to please wait for a call for a psychiatric evaluation. He then went on to explain that Lyme disease doesn’t exist here, and that even if it did, he has worked in Lyme-endemic areas before and that the main symptoms are joint pain and a rash, and that it wouldn’t present itself in this way. Well, that’s funny, because I have an online support group of 1700 other people in Canada who have the same symptoms as I do as well as an in-person support group that is run by an MD, who also agrees with the rest of us. My mom even posted in the online support group when I went into the hospital to see if anyone else has ever lost the ability to speak or experienced anything that I was experiencing at the time. Many people responded to her thread saying that yes, this is something that has happened to them and that usually the only thing to do is sleep it off. One woman even commented that she lost her ability to speak for 3 months.

“Actually, there is a public health map available online that shows that we live in a Lyme-endemic area here in Ladner, BC,” I told the doctor.

“Yes, well, we have found ticks here with the Lyme bacteria, however you cannot get Lyme disease here.” he responded.

Shocked at the blatant contradiction in his single sentence I gave up and let him go on about how someone would be calling me in the next few days to set up my psych evaluation.

I could skip the evaluation, but that, I’m sure, would only add fuel to their fire and give them more reason to not treat me next time. I have no reason to fear the evaluation either, so therefore I will go – and when I do go, and pass it, what will the doctors do then when they no longer have mental illness as their scape goat? Don’t get me wrong – I understand why they’re sending me there. I have a history of mental illness, the Canadian testing for Lyme is not accurate (they only test for antibodies which many people stop producing after being sick for a long time, please watch a short video here, this video is based in Europe but explains really well what is also happening in Canada and why we can’t get proper treatment and testing here) and they can’t or won’t figure out whats wrong with me. So therefore, they have to pass me off onto someone, and mental illness is the easiest scape goat. I also appreciate and respect the fact that they do need to rule out mental illness, and although my family doctor and I know that this is not due to mental illness, the ER doesn’t necessarily know that and still has to cover their asses, and since Delta Hospital does not have an MRI machine and I’m already waiting for a neurologist appointment that was marked urgent by one of their internists, checking my mental wellness is all that’s left for them to do.

What’s ironic is that 12 hours after leaving the ER I got a phone call to see if I could see a psychiatrist that day! In all of my years battling mental health I don’t think I had ever gotten in to see a mental health professional that fast. I battled long wait lists and can remember phoning and phoning different agency’s with no response and begging to get in to see someone quicker. When I was in the thick of my fight with mental illness I would have given anything to see a psychiatrist that quickly and get on the road to recovery. If that’s what I was battling now I would have dropped everything to be able to get to that appointment on Wednesday. However since its not, I wasn’t willing to miss work for it and will be going next week instead.

Meanwhile, the neurologist referral that was marked urgent and sent to Jim Pattison is what I really need right now. My Internist assured me that I would be getting in very quickly due to its urgent nature, and yet when I phoned to check on the timeline, the staff at Jim Pattison informed me that although it was marked urgent by the referring Internist, the doctors there deemed it routine, and I had been put onto a year long wait-list.

I know that a lot of people feel strongly that our medical system is the best in the world, but I have to respectfully disagree. I fought for years to receive the mental health treatments that I needed, and now that they’re not what I need they’re the only thing the doctors here are willing to give me.