How A Chronic Illness Can Impact A Relationship
Lyme isn’t your burden alone. Everyone close to you will be affected. Here are just a few obstacles that you and your relationships can go through when you have Lyme or any chronic illness.
Not Knowing How You’re Relationships Will Evolve
Oh yes, love.
BFF’s for life.
Relationships are complicated enough for healthy people. A chronic illness can impact a relationship day in and day out.
We can’t walk away from our own physical debilities, but our loved ones can if they so choose. There is a fear that being sick will break our relationships apart, or prevent us from starting new ones. I’ve read enough relationship psychology to recognize that fear is a part of healthy relationships, too. And I’ve lived at least long enough to figure out that no one can predict the future. Obstacles can strengthen relationships and yes, they can break them. The beauty of being sick is that it makes us extra grateful for those that choose to stand by us, and grateful, too, to see the wrong people walk away.
This section will putter through a few issues with Lyme’s impact on relationships.
You’re Not The Only One Going Through It
I’m surrounded by family and friends who don’t have Lyme Disease. I can easily think to myself that “no one understands” but then I’d be disregarding the fact that they are experiencing pain from my disease, in their own ways. They may feel sad or scared for me, worry about my mental health, and worse – feel helpless.
If you think about it, it’s awful to watch someone you care about go through trauma. Not just because you feel sorry for them, but because there may be nothing you can do to help when that is what you want to do most.
The people who you’re closest to will be impacted in some way by your changes in mood and physical abilities. Maybe you’ve become the world’s flakiest friend, and your boyfriend gets it but your friend vilifies you for it. Maybe you can’t think or walk straight and it breaks you mom’s heart but your siblings carry on teasing you as they always have. It’s not just you who has to adjust and accept your new life circumstances.
You’re Mate And Your Health
I asked my partner, “What do you go through when I go through a relapse?” A man of few words, he said, “Empathy, and I guess nurture.”
Barbara Kivowitz, blogger from insicknessinhealth.blogspot.ca stresses that, besides us, our spouses are impacted the most in our health struggles. Being a part of a couple means blending many aspects of your lives together and coming to rely on the other. When one spouse becomes unreliable due to an illness, the other spouse might feel let down. Kivowitz emphasized that “Illness gets to make decisions that once belonged to the couple – decisions about work, travel, finances, and family. Pain and exhaustion take precedence over desires and chores.” What was once carefree takes on a level of seriousness beyond “I do,” an added sense of morbidity, and probably more time at home than out exploring the world together.
Types Of Reactions
There is a quote about friendship in the book “On My Own” by Florence Falk that goes like this: “I think you can sense early on whether it will be an uphill battle and you will always have to be smart, competitive, and careful, or whether there will be a flow back and forth.” There are exceptions, always, but I think the friends that have proven to be there through the good and bad will be the ones who are there for you throughout your health battles. The ones that aren’t there, well, for me, it came as no surprise.
Being sick is just another force to teach you about human psychology. It entertains me to watch people react when I tell them I have Lyme. There have been a lot of people who don’t know what it is, or are ill-informed about it (thinking its easily fixable, or alternatively, a death sentence). A lot more people – even close friends – are indifferent, maybe slightly interested in it for an instance only to never ask me about it again. I don’t mind this, because it means I can disclose it and be honest, moving on to other topics without having to deal with everyone I know asking me if I’m feeling okay today. I don’t need the above mentioned people to take too much interest in how I am genuinely feeling, because I typically don’t expect much from most people. Not in a bad way, just in a sense that I’d rather not get disappointed by unmet expectations.
Then there are the gems that amaze me, exceed my expectations and show me the power of compassion. Being sick has definitely helped me gain the insight to examine the people in my life and find my golden-plated friendships. I have some friends who comfortably ask me about my experiences and get to know me for how I am now – less vain and more genuine than before. These friends recognize that I am not static, and they want to witness the ever-changing nature of me. Some of my friends don’t ask much about my Lyme per se, but they are exhilarating to be around, and would be comfortable and receptive to my opening up about my illness – or anything else – if I chose to. Then there is the odd acquaintance I share my story with who blows me away and goes home to research, later telling me how shocked they are about the controversies and hardships Lyme patients deal with. I don’t expect a lot out of people, but people can be wonderfully surprising.
Some friends are emotionally unprepared to have a sick friend, and that’s okay. But, being a sick friend, the only friendships that endure, for me, are the ones that can get over that and show some level of compassion. Simply put, my closest friends are the ones that can – and enjoy – having what my friend Dizzy calls D&M’s (deep n’ meaningful conversations). Lyme does not have to be – and is not – a primary topic of conversation for me, but listening and compassion are necessities in my friendships that pave the way to whatever I, or the other, choose to disclose.
The reactions you can get from others are, like people, complex and dynamic. Some will be emotionally available, others may offer help in the form of a car ride or a cooked meal. Some may disappear from your life until you are more “fun” to be around. Some might be fascinated, for intellects sake, in the science and politics behind your illness. Some seek to understand. Some assume. Some care but are unable to be emotionally or physically available to you because they have their own lives and problems, too! You will find out who cares very little of your well-being fast and these people – maybe fun and entertaining to see now and again – will probably not be your go-to for support the way they were before. You may react to your illness by appreciating different qualities in friends than you had before.
Then again, the people you keep close, who love you and try their hardest to be supportive, will probably react in all the ways listed above at some point. They’re only human. Forgive them because they are human and because you, too, will need forgiveness one day. As Falk says, “sometimes a friend doesn’t call when she says she will, or listen empathically enough to our story, or rough-rides our story with her own. If we accept these kinds of oversights as inevitable facts of human nature, rushed lives, or a friend’s momentary self-preoccupation, then, as needed, we will open up a space to meet and talk and may even become closer for the effort.”
I haven’t seen my friend Jamie for months, and I miss her, but she is overwhelmed with school, health and other chaos. We don’t hold it against each other when one of us cancels plans or performs a disappearing act, because we understand that were both loving – but burdened – people. We avoid pressuring each other, because we understand the heaviness in each other’s lives. When we see each other, we acknowledge the effort it takes for whoever it is that’s relapsing at the time and so it’s always a celebration when we reunite. That’s what I call a friend!
Partners As Caretakers
Some of us have partners who become our caretakers. Although I admire partners who will do this for us, I think it can put a damper on relationships. Yes, I would absolutely take care of my partner if he got the flu. I would literally wipe his ass, if I had to. I would not, however, want to change the status of my romantic relationship into “caretaker” and “patient.” For couples who do have these dynamics, maintain your status as individuals, too. The “patient” can do chores when he or she has the energy to and acknowledge that the “caretaker” can get exhausted without breaks. Lean on, but do not take advantage of someone you love. On the other side of things, the “caretaker” can communicate that they need rest or ask for timeframes where health is off discussion-limits.
Disclosure – Friends, Family, Partners
It’s helpful to figure out how much about your illness you want to share with the people in your life. We all have our own communication styles. My strategy is to verbalize everything, since the expression actions-speak-louder-than-words often falls out the window when your body paralyzes you from action.
Disclosing your health issues doesn’t work with everyone – it can make some people uncomfortable. Conversely, some people hear you but generally don’t have the capacity to understand sickness when they haven’t been through it themselves. Save good communication for those receptive to it.
Even if they are receptive, they may not want to talk about Lyme it all the time (a journal can come in handy, here). Many of my friends and family members routinely ask me how I’m feeling, and I respond briefly. I try to avoid allowing my health to take center stage in any conversation unless I’m very sick and it’s the focus of my life at that time.
To figure out what you need to disclose, here are some questions you can ask yourself: How much do you need to tell your friend/family/partner about your health in order to feel understood? How much do you think your friend/family/partner is receptive to hearing? Is your friend/family/partner understanding? After your disclosure, do you feel better or worse? Does your friend/family/partner want to know more than you want to share? In sickness as in health, communication goes a long way.
It’s also important to gage how your friends, families and partners feel as you disclose – verbally and tangibly – your struggles to them. Is it too heavy for them? They should only take on what they can handle, and also know how to communicate effectively, for the relationships to stay healthy (it takes two).
Disclosure – Dating
Sometimes, it takes experiencing something ourselves to fully understand the weight of an issue. My very healthy boyfriend accepted that I had an illness, which I disclosed before we started dating. That wouldn’t stop him, he said to his friends. At the time, I was in remission, and he wasn’t prepared for what was coming. It wasn’t until I relapsed, was bed-ridden and crying in pain and in shame of falling away from improvement that he felt truly “disclosed” to. We both had to communicate at this time, so that I knew he understood as best as he could, and so that he knew that this was – sometimes – my reality, and that I liked to deal with relapses on my own, with space when these moments arose.
I’m happy that I disclosed my illness early on, giving my partner a chance to walk away before we got invested. If I hadn’t then it would have felt like an omission. I also wanted to scare him away, if my health was something that would stop him from loving me.
If you are confident in yourself, love yourself, and feel like you’ve gained as much from illness as you have lost then dating should be a breeze; people are simply drawn to people full of love, with or without disabilities. Don’t be afraid to disclose your illness to potential partners. Tell your partner your life is great and you expect it to continue being great, but that you do need a lot of rest!
There are many reasons why we reject each other in love. We all have our deal breakers and should not hold that against each other. I’m very sensitive about people telling me what I should and should not put up with. It’s the 21st century; we have more opportunities than ever to claim the lives we want. Marriage, kids, travel, careers, going solo, flip-flopping sexual orientations, changing careers four times, there is not much that hasn’t been done. We don’t blame people for turning down relationships when two people have very different lifestyles, and I don’t think we should blame people for wanting to be with or without a chronically ill partner.
Actually, I’d be grateful if someone turned me down because of my illness instead of insincerely committing. Imagine someone sticking around because they think they can change you, later to find out that your illness is responsible for their ever-growing contempt towards you. It’s a lot nobler when someone knows their limitations and owns it, then when someone tries to stick around to be a “hero” when they simply are not.
Attraction Is Personal
At the end of the day, most of us will find love (if we want it). The beautiful can be emotional vampires and the physically impaired can be the most inspiring. Or vice versa. But surely, we all get our chances at love. Being sick surely adds pressure to relationships, requiring more patience and tenderness than ordinary relationships. But ordinary is overrated – some people get married when everything is easy and everyone is healthy, only to part ways when they face the minutest of hardships.
One positive of dating someone when you’re sick is that you see vows of “in sickness and in health” play out. If anything, struggling with an illness – if it doesn’t turn you bitter on yourself – only makes you more compassionate and more drawn to other compassionate partners. Dating becomes less about aesthetics and charm and more about spiritual connectedness that surpasses age and time. It sets you up to find a love that is flexible – one that doesn’t stop growing because one of you has gained 10 pounds. If you can take on a chronic illness with a partner and maintain a loving closeness, you can bet your love is solid.
While I do believe having a chronic illness can deepen a bond (if any movie romanticizes this, its “Love and Other Drugs), the fact remains that divorce rates are higher for couples dealing with chronic illnesses and autoimmune diseases. The stats fluctuate all over the internet, but from what I’ve found it seems that divorce rates are almost 2 in 4 for “regular” people and about 3 in 4 for the chronically ill. Couples coping with chronic illnesses not only face the hardships of illness, but of all the other hardships that other couples face, too. Lyme can be a 24/7 illness, create financial burdens, create overwhelm, and worst of all, it can burden the healthy partner with most of the house and family chores.
I like to ask old married couples what their secrets to a lasting relationship are. The obvious ones that come to mind are communication, creating elements of surprise and taking time apart. We could probably all benefit from taking this advice. I think another important way to maintain a relationship, especially for couples dealing with something like Lyme, is letting go of negativity as much as possible. Thoughts like your spouse “deserves better” or that you’re a victim are negative. Feeling sad that your spouse is sad is a sickness in itself that you can pass back and forth. Feeling threatened by your spouse’s desire for time away from you is negative. These are negative thinking patterns enforced by fear. Speaking for myself, negativity and low self-esteem due to having a chronic illness have killed my relationships – not Lyme itself.
Ask yourself what it will take to maintain your relationship and if it’s worth it. If it is, then what great motivation to get better, to put in the effort to adventure outside, if not stay and do something simple to show gratitude. No matter how sick and tired we are, we can always be grateful towards our partner and find ways to show it.
In the best case scenario, Kivowitz’s words ring true: “When couples face serious illness it is grievous, but it is also an opportunity to learn how to be with each other on deeper levels. Before illness, the couple can cruise along adapting to circumstances in the moment. After illness, the couple needs to be more intentional and candid. But the effort made to build new habits, to assess responsibilities and lifestyle, to communicate with authenticity, and to become more conscious about adapting to changing circumstances will strengthen the relationship in ways that reach far beyond the illness.”
If your partner makes assumptions (i.e. thinks you’re faking it without asking), doesn’t attempt to understand, or makes you question your sanity, stand your ground and take care of your health. I’m not a relationship expert, and I’m not really concerned with how compatible you and your boyfriend/girlfriend/spouse/polyamorous triad are. I’m more concerned about your survival, and if your relationship supports that survival or jeopardizes it. Lyme is roller-coaster enough.
Surround yourself with awesome people. The ones that try to understand, that don’t resent you for something out of your control, the ones that have their own lives! They don’t need to applaud you for enduring constant pain (as if you would if you had a choice), but they do need to respect how you live your life.
Pleas share you experiences in the comments section below <3