“We should be loved because of who we are, not despite it”.
Relationships can be difficult but add lupus or any other chronic illness into the mix and they can sometimes become next to impossible, in some cases it causes the relationship to break down entirely.
Often the person with lupus feels they’re a burden on their partner. What we forget is that no-one is perfect, even without a chronic illness we all have other issues to deal with. Your partner/spouse/friend will have times when they will need your support, so in reality it’s likely to be give and take and not all take.
I looked into the advice that is available for people dealing with relationships and chronic illness and what follows is some of the most sensible available.
Talk, talk, talk
Pretty obvious really, no-one is a mind reader so to work as a successful and happy team you need to communicate your feelings, be they good or bad. If you don’t express your feelings, they become bottled up and will only cause frustration later.
Everyone knows that communication is important in any relationship, but even more so with lupus as the third wheel. Others may never know what it’s like to live with chronic pain, which means the only way they can understand our pain and energy levels is if we tell them.
I know that can be hard, I’m a great one for hiding my pain and not wanting to seem to be whining about it, but our partners need help to understand what we live with.
Change and adapt
You might previously have done most of the housework, cooking, cleaning etc or have been the main breadwinner but now your partner may have to take on a bigger portion of that and you don’t want them to feel overwhelmed.
Perhaps now might be the time to ask family and friends if they could sometimes step in and help with an odd daily task? I’m extremely fussy when it comes to my home but it might also be time to re-evaluate standards and realise that it’s not absolutely vital to keep the house immaculate. We naturally make changes and adapt regularly as we get older so it’s not that alien a concept.
Understanding
We should remember we aren't the only one who feels pain. Sometimes we get so caught up in our own condition that we forget about the pain our partner is feeling. They often also feel frustrated at not being able to fix us. We need to occasionally take a step back, not be self absorbed and check how they are, lupus is tough on all our loved ones and not just us.
This quote is from a man caring for his partner “It feels to me as if my girlfriend has not once stopped to consider my feelings throughout this ordeal, and I don't feel like I can talk to her about it - or anyone else for that matter.”
Try to stay independent
We don’t want our partners to view us as just a ‘patient’, we’re much more than that. We should stay as independent as possible and try to pursue our own dreams and goals as much as we are able. If you are able, if might mean things such as going to your doctors appointments alone (also stops partners viewing us as primarily a patient), meeting friends for a chat & coffee, taking part in a course of some kind etc. You should encourage your partner to also participate in their own hobbies and pursue their own dreams as otherwise they may begin to feel resentful if they lose all of them.
Make time to have fun together
Life is too short not to have fun! Enjoy each other's company and try to see the brighter side. Even though life presented you with an unexpected blow with lupus it doesn't mean you still can't enjoy your life. Laughter really can be the best medicine, we cope with a lot so we need have to laugh sometimes. It helps relieve stress, relaxes our muscles and even helps us cope with pain.
Continue to pursue the activities you did as a couple before you were diagnosed for as long as possible. When the situation changes, look for new activities you can both share. Spending time with each other helps build trust and security within the relationship. It's important to do this to build long-lasting shared memories and a close bond.
Find ways to keep intimacy alive
Understandably, this may or may not be achievable in a physical sense. No matter what, show each other physical affection: hold hands, hug, kiss whenever possible. Maybe learn how to perform a simple foot, hand, or back massage The more touch, the better, it’s soothing, cuts stress and makes you feel closer and happier.
If you’re experiencing sexual difficulties, discuss them with your partner and your doctor. Your doctor may be able to recommend therapies or medication.
Here are some good articles on this subject:
9 Unexpected Ways To Improve Your Sex Life As A Couple, When You're Dealing With A Chronic Illness.
But what if after all your efforts things just don’t seem to be right between you? How do you know if you’re in a relationship that is doing you more harm than good? Read on for just some of the signs that you may be in a toxic relationship.
Lack of communication, if your partner doesn’t want to discuss your illness or learn more about it and/or refuses to talk about how they feel.
When you feel you’re treading on eggshells with your partner, constantly anxious about ‘doing/saying the right thing’ and you feel drained by this.
You’re with someone who continually pushes you beyond your physical limits even if you’ve explained what the limits are and the consequences of pushing yourself too hard.
If your partner doesn’t believe you’re really sick, your symptoms or the severity of them or says you’re just being lazy.
When your partner gets annoyed when you get sick as if it’s your fault or you have some control over it.
If they accuse you of pretending to be ill for attention or sympathy.
If despite having this person in your life you still feel lonely. They are obviously adding nothing to it and you may be better off without them.
Trust your instinct, it’s usually right, if you feel this relationship is toxic it probably is.
Here's a few more related articles that you may also find useful:
Do you struggle to love someone who is chronically ill?
Why I divorced my chronically ill wife.
5 important mistakes I made as a partner to someone with chronic illness.
What it’s like to date a woman with chronic illness.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice from a qualified physician. Find out more in our Terms of Use.
