I've been wanting to write this for a while now as having a chronic illness in relationships and balancing those dynamics can be a lot of work for all involved. I also find it difficult to find support out there when I've been going through this as my chronic illnesses affect me in certain ways and articles can't always cover every aspect or fit to your unique situation and dynamics; I am going to do my best to bring in points of reflection to this article to try and allow for this as you are the expert of you in your own life!
This post will be focusing mostly on typically romantic and sexual relationships, however there will be a lot of relatable content for other - familial & platonic - relationships too.
Content:
Sex Life -
Many with chronic illnesses can struggle with their sex life once symptoms start. There can be many factors that come into this:
Pain levels can be at a point where being touched doesn't feel comfortable or pleasurable. This can also mean that positions and penetration can be really uncomfortable too.
It can be that our bodies feel medical. I often find I think of my body in relation to my pain and symptoms not how I actually am as a person and not as a sexual being either! Having our body discussed, investigated, and "judged" in a medical setting can leave us with trauma and difficulties in self-image.
Scheduling time for sexual activity can be difficult and takes out the spontaneity, but sometimes this can be necessary as waiting for a "good" symptom day can be unpredictable. This is not to say force yourself through your comfort levels in order to participate, but rather scheduling time can allow for the opportunity to be intimate with your partner(s).
If you already have a mis-match in libido, chronic illnesses on top can be really frustrating for all involved as it adds an additional "challenge" in connecting so both/all of you involved feel comfortable and satisfied.
How to navigate this as the individual with chronic illness:
Self compassion - Are you in touch with your compassionate voice? If not this is something to work on as it can help give you some space to allow all of the discomfort whilst trying to bring space for the pleasure.
This might be getting back in touch with that feeling of whenever you last felt comfortable in your body. If you can't remember a time (I feel this!) then imagine what that might be. From this you can try to harness the mindset you had about yourself then.
Try to view yourself without judgement and without focusing purely on the chronic illness, but as who you are as a whole being. What do you see?
It can sometimes help to think about what your partner(s) see when they look at you. What do you think they'd say? What have they said?
Make intimacy a priority
Take it into consideration when you are putting your routine together, where can you fit it in to give you enough space to prepare, participate, and recover?
This doesn't mean for intimacy to be THE priority (unless that's how you want it), but to try and have it in mind when making plans. If you're like me spoons are pretty limited and so I do have to plan days of rest and recovery into my schedule, so make intimacy part of this.
How to navigate as the partner(s):
A change in sex life from our partner(s) can sometimes feel like it is about us, as the partner. Often, this isn't the case and your partner really wants to be intimate but there can be all sorts of feelings and thoughts that they are battling in order to do so.
Find ways to be intimate with yourself whilst your partner is coming to terms with their illness and what this means for them.
Try to be patient with your partner - it may be that sex is a different pace to what it was before.
Navigating it together:
Reframe what intimacy looks like
Does sex need to be penetrative or can it be more about the connection and sensuality of togetherness? Maybe oral or more sensual acts could be more satisfying when symptoms are causing discomfort.
Orgasms don't have to be the aim - quite often orgasms are seen as an "aim" in intimacy rather than it being acts to be intimate and together.
Maybe mutual masturbation could be a more comfortable option?
Or being present whilst your partner satisfies themself?
Could more lower level and less demanding intimacy help offset the change in dynamic and sexual activity. Things like long hugs, holding hands, kissing, cuddling etc.
Communicate about what positions feel comfortable or now feel like they're off limit. Keep checking in with each other:
A check in is having a conversation about your experiences, what works, what doesn't, what you'd like to try, what's off limits, i.e. exploring your boundaries
It can be useful to check in before sex, during, and after.
Before may be, "do you feel able to do X?", "I would like to X is that okay with you" etc.
During may be, "does this feel okay?", "that's good", "can we try something else" etc.
After may be, "how was that for you?", "I noticed X was uncomfortable maybe we try Y next time" etc.
If you're in non-monogamous relationships, it may be worth looking at how the dynamic has changed and how this impacts the polycule and keeping these conversations ongoing.
It might be that group play might feel like too much now and so this would need to be communicated with all involved.
It might be that talking about intimacy with other partners, who don't have chronic illnesses, could bring up a lot for the partner that does, and so space for this will be needed.
Jealousy and comparison may surface, even if this was never an "issue" before. This will often be coming from a place of insecurity and so a talk about needs and boundaries could be useful to reaffirm your relationship.
Maybe a Don't Ask Don't Tell might be needed for the time being whilst the diagnoses are processed and understood more.
Remember to get consent from all partners about disclosing intimacy details before you share the details with others. Just because they're not in the conversation doesn't mean they don't have a say in what they consent to.
Burden
There is a stigma in society around being disabled and/or chronically ill. This stigma can be internalised and so coming to terms with a chronic illness or disability can be a battle with the internalised stigma and ableism.
It can leave us feeling like a burden in our relationships - like we're not "enough" or we're bringing our partner down, even when this often isn't the case!
I have conversations with people about how we, the person, are not the burden, but a chronic illness is a burden as it is heavy and disruptive in so many ways. That burden is a part of us, but it is not the whole being. And whilst we feel that burden so deeply our partner(s) can be willing to help lift and share in it with us - and I'm sure you'd do the same on the other spin.
How to manage this as a dyad or group:
Allow space for ALL of the feelings in the relationship that come up from the chronic illness.
You're allowed to feel shitty from the impact the illness has on you, it's understandable.
Your partner(s) allowed to feel frustrated because of the impact of the chronic illness too.
You will both have feelings about the impact of the chronic illness on your dynamic, and whilst it may change this dynamic in ways which feel difficult and challenging, it can also highlight the love, care, support, and respect you have for each other.
Accept the help that is being offered to you. Your partner wouldn't offer it if they didn't mean it, and even if they did that's still their choice and you are allowed to accept the help.
Accepting help doesn't confirm that you're a burden, but it does accept that you may be struggling with some very real difficulties that you're facing, and a relationship is about facing those difficulties together.
In arguments it can be hard when things are said in anger. If the shame and stigma has been perpetuated in your relationship then it is important to talk about how this has made you feel and work out how you can communicate going forward.
Maybe you have a word to give yourself space when disagreements are becoming heated and you feel you'll say things you'll regret or don't mean.
Try to avoid name calling in arguments, remember that a way through arguments is to look at the problem rather than battling each other, i.e. you and me Vs. the problem, not you Vs. me.
If the person with chronic illness is perpetuating the stigma and putting themselves down vocally, you can challenge them on this with how this makes you feel to see them do this.
Again, communicating in a way which tries to remove judgement and holding each other with compassion can be healing.
Imbalance of Responsibilities
The weight of responsibilities within the relationship and household can be a difficulty in any relationship, and when chronic illness is then added in, it can cause some challenges. There is no "right" way to divide responsibilities within a relationship. When I talk about responsibilities I am including household chores, time spent with each other, children, pets, work & finances, hobbies, social events etc. This can be responsibilities spread across all households of the individuals involved in the relationship too.
There can be shame and guilt felt by the person with chronic illness as it may mean having to ask for more support from partner(s) in order to keep up with responsibilities, this will look different in every relationship, but it could look like:
Partner A, with chronic illness, still working full time to keep finances stable but then needs Partner B or children to help with the keep up of the household.
Partner A going part-time in work and not doing as much planning or social events, in order to keep up with the household responsibilities
Partner A giving up work so that they can do household responsibilities, still do hobbies, and have social life.
The shift in dynamic can cause a ripple affect onto everyone else in the household (family, children, parents) and in the relationship/polycule.
I have struggled with this personally, in how to juggle everything and give each part of my life the time I want to, but the want isn't always possible and this can lead to thoughts and feelings of "not pulling my weight" or "not doing enough" even though I do all I can. Pacing has been a big challenge but I have been lucky and privileged enough to be supported whilst figuring it out, but I know this isn't the case for a lot of people.
What you can do as the individual with chronic illness:
Take some time to explore and understand your capacity. This can take a while and may need to be done "on the go" as we aren't able to stop life. My post around Pacing may be useful here.
Understanding capacity will then allow you to know what areas you need to prioritise or where you may need help from others.
When communicating what you feel able to do and not to do, allow space in the conversation for their feelings which may come up in response to this. Change can be jarring for all involved, but communicating it where boundaries can be clear is useful.
Allow yourself to grieve - there is a big grieving process involved when getting a diagnosis of a chronic illness. It may not be as impactful for everyone, but it can take a while to process that the person you once were might not be possible anymore, certain hobbies, foods, ways of life might not be possible anymore, and the life you once envisioned for yourself can all be a felt loss following a diagnosis. Remember to communicate this with your partner(s) when you feel able to so they understand what's going on as it can cause a disconnect when it is all bottled up - you don't have to go through it all alone.
What you can do as the partner(s):
Again, be patient. Figuring out the limitations of our unpredictable symptoms can take some time to figure out. And when doctors aren't always the most supportive or helpful it can take longer.
Allow space for communication around what is possible and what isn't. Keep in mind that what is possible at this point in time can change for anyone involved and so regular check-ins on both sides is important.
Look after yourself too - if you take on more responsibility in your relationships, this can take a toll and so it's important to still look after your own wellbeing.
You might also experience a grief process as the person you're spending your life with is going through a big shift in identity which will also impact your relationship. So you may also grieve what you once thought your relationship and life might have looked like and to then process what this now might look like with the chronic illness involved.
What you can all do:
If the responsibilities are feeling too much for both of your capacities, it could be that you look to outsource some of the help needed - other partners, family, friends, hired help. I am aware this will be a big decision to lean on your support networks or to lean on your finances to bring in more support, in which case remember that there are charities and organisations that may be able to help.
Reduce the expectations that you put on yourselves. It may be that you need to allow for the laundry to build up a little more than you'd prefer, or you no longer iron every piece of clothing, or you vacuum once a fortnight rather than weekly etc. This can be challenging, and it may be that this is something you've already done and so reducing the expectation further pushes past your comfort level or wellbeing level.
It may mean living under your means or cutting down on spending. Again, I realise this isn't possible for everyone where this is already where you're at, in which case it may be leaning on support from organisations and charities even further.
Keep checking in with each other on where you're both at, how you're both coping, if anything can be done differently, etc.
Support & Lack of
There can be times where relationships hit a real rocky patch (with or without chronic illnesses) and so this can be especially difficult when chronic illness is involved.
It may be that the partner without chronic illnesses feels like they are being leaned on too hard and can't offer the type of support the person with chronic illness is needing.
Or it might be that the person with chronic illness is asking the minimum needs to be met by their partner, but the partner isn't willing.
Or it might also be if you're in a polyamorous relationship, and that your meta (your partners partner) is the one with the chronic illness and your partner is giving more time and support to your meta than to you and so you're feeling unsupported and cared for.
What to do if you're feeling unsupported:
Assess what your needs are which aren't being met and look at if they can be met in other ways.
Is there anyone else you could talk to?
Are there other ways of getting things done e.g. ordering food deliveries rather than going out to the shops.
Communicate your needs to your partner and how it feels with them not being met - try not to blame but focus on what you can both do to help the situation.
What to do if you're not willing to support:
Think about what your capacity is and what you feel able to support your partner with.
Have a conversation explaining your boundaries and how you're feeling. As above try not to blame but instead both focus on helping the situation.
Relationship Breakdowns -
Unfortunately it may be that you can't come to a decision on how your needs can be met, or how support can be improved, or how you can both work together, etc. and this can lead to a break down in the relationship. With break ups and chronic illness it can be difficult to manage as the emotional stress can impact the intensity of the symptoms and lead to a flare up, so it is important to look after yourself as best you can with the resources you have.
What to do with a break up:
Try to put in more self-care so that you can manage any unpredictability of your illnesses as possible. This isn't always doable but having the space to care for yourself however that looks is important.
A break up will mean reassessing your capacity, needs, and wants with your life and how this might look now without your partner in the picture.
It may be that you have both decided to deescalate your relationship in which case it will be important to have a conversation around your boundaries and how your dynamic will look going forward.
Lean on your support network, organisations, charities, helplines etc. where you can.
Even with chronic illness, sometimes keeping a routine can be helpful when dealing with a break up as it brings a feeling of normalcy to life where it can feel like it's falling apart otherwise - this is especially so where your partner was your main support structure.
Dating -
Dating can be an exciting part of relationships but it can also be emotionally draining and bring the priority of safety too especially for femme presenting chronically ill individuals. Some general points:
Potential partners may not be willing to meet your needs and expectations in a relationship and use your chronic illness as the reason. An example, "you can't be serious about meeting me if you're cancelling from migraines all the time..."
This can be really unfair when a chronic illness is unpredictable and something you didn't ask for.
If you're in a non-monogamous relationship it's important to know what your agreed relationship boundaries are before dating - again emotional stress can cause more intense symptoms and so being on the same page as everyone from the off can be helpful in these situations.
Be mindful of the dopamine loop when dating in how this can be something you do for short bursts of connection and feeling good. Remember (mostly) they are other humans on the other side and so their emotions need to be considered in how serious you are about making a connection and moving forward.
What to do as an individual with chronic illness:
Try not to compare yourself to other people on the dating apps or to metas.
Remember to check in with yourself on your capacity levels. Do you have the energy and time for a/another partner and what does this look like if you do?
Whilst it can be vulnerable to do so, it can be useful to be open and honest about your chronic illnesses from the start so you are both on the same page.
N.B. Don't feel pressured to do this! What you share with others is absolutely your decision and you do not have to share anything if you're not ready.
Look after yourself - societal timelines don't fit everyone, in fact they don't fit most people, get in touch with you, what you want, and go from there. Try not to put pressure on yourself, but instead be kind to yourself.
What to do as a potential partner:
Be open and curious as to what the other persons boundaries are.
Don't push for details, someone will tell you about their chronic illness when they're ready
Do your own research around what it means and if it's something you're wanting to be supportive with.
As above, you also need to look after yourself too. Whilst dating can be fun it can take it's toll on you.
Relationship with Self -
I am planning on doing a post about coping with chronic illness which will go into this in more detail, so keep an eye out for that.
You are in a relationship with yourself, just as much as you are with other people. And so it is important to keep checking in with yourself about how you're doing and what's going on for you. I find that this changed often, I get a routine in place and then another symptom comes up or a flare up happens and I have to start again with finding what works for me.
Try to be patient with yourself. It can be difficult to go from being able to do whatever you want to having to try to pace and take things slow.
Turn up the compassionate voice & turn down the critical - it won't help you to put yourself down on top of the difficulties you're dealing with. Yes, we can learn from any mistakes we make, take accountability, and reassess our behaviours, but we don't have to hold it against ourselves.
Learn different types of self care - physical, mental, emotional, social, spiritual etc.
If you find yourself struggling and not ready to talk to anyone, try writing/typing it out. Set a timer for 30minutes and just let it flow out without judgement. Alternatively you could write it as a letter directed to someone or yourself.
Look at individual therapy and also relationship therapy to have a space to process all that's going on and navigate you through the difficulties.
Further Resources
Access to Work - https://www.gov.uk/access-to-work
Turn 2 Us for financial and general support - https://www.turn2us.org.uk/get-support/
The Advocacy Project - https://www.advocacyproject.org.uk
POhWER - https://www.pohwer.net/
Voice Ability - https://www.voiceability.org/
The Disability Rights Org UK has further signposting and guidance that might be more specific - https://www.disabilityrightsuk.org/resources/advocacy-get-your-voice-heard
Mind info on Advocacy - https://www.mind.org.uk/information-support/guides-to-support-and-services/advocacy/types-of-advocacy/
Therapy:
Want to know more about me check out - https://www.emilyduffytherapy.co.uk/post/what-i-ve-learnt-from-my-fibromyalgia
Want to know more about non-monogamous relationships check out my guide here.
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