How to Discuss Chronic Pain/Illness with a New Partner

For this post I really wanted to draw upon my personal experience. From October 2016 to August 2022 I was single. Yep, six years. A lot of dating, some friends with benefits (though there was a 2+ year period starting before the pandemic and lasting until last year that I did not have sex outside of masturbation). Wow, this topic got personal fast, I hope you’re all in for the ride. In August of 2022 I met my current partner and we have an amazing relationship that continues to grow. Something I struggled with while dating many people over the past several years was when and how to tell them about my pain and diagnoses and what that would mean for the relationship.

My partner and I took a trip in November to a cabin on an island and spent the entire time building emotional intimacy, including talking more about my illness and pain.

I’ve had conflicting opinions about this. I have done everything from reveal it on a first date so that if it was an issue at least we didn’t have to go on subsequent dates, to not revealing it at all over 4 or so dates and then never having the relationship develop anyway. Plus whatever is in between. I’ve also read other peoples’ opinions and even found a study on the subject of chronic pain/illness and dating and disclosure. From what I’ve figured out is that the timing and your particular reasons for it may not matter. We know ourselves and what we’re looking for, best. In this relationship I mentioned it maybe 4 or 5 dates in. We were starting to create a bit of emotional intimacy so I let myself have the first of many moment of vulnerability, and honestly I think it helped deepen the relationship, allowing both of us to take opportunities to continue to be vulnerable with each other. This kind of vulnerability is a requirement for emotional intimacy.

How did I do it? You might be wondering. The first time I mentioned it, I did so fairly casually. I can’t remember the exact conversation we were having, but I mentioned that I had chronic pain. In a conversation on a subsequent date I revealed a bit more about the pain and my illness diagnoses. Again, more in conversation, not in some kind of grandiose we need to have a big discussion kind of way. However, what I did that I think was particularly important and helpful was open it up to being more of a conversation by asking her if she had any questions and letting her know if she does she can always ask. She has asked questions along the way and I’ve always been open with answering them. And I’ve been open with communicating how I’m doing (physically and emotionally) as well. My hip hurts during a walk, I mentioned we need to walk slower because it hurts (we are typically both very fast walkers so it’s also kind of obvious when I’m in pain).

My tips:

1. Be open and honest – this may mean having a big sit-down conversation or it may be a more casual approach like I took, either way, it takes some courage and vulnerability.
2. Invite your partner into the conversation – make sure they know they can ask questions and you’ll try to answer them to the best of your ability.
3. Ask them what their concerns are and thank them for their vulnerability as you navigate it together. Sometimes you’ll be able to put their mind at ease, sometimes they’ll be able to put your at ease, and sometimes you might agree to figure it out as you go.

It takes a lot of trust, emotional intimacy, and vulnerability to have this type of conversation. If you want to deepen the relationship, and create more intimacy, I believe this is a necessary step for anyone with a chronic illness or chronic pain. Though we may have beliefs that there is no one out there for us (I had a previous partner put that belief into my head for quite awhile), if we are open to some of the uncomfortableness that may come with dating, we can also find a partner who is the right fit for us.

I hope this helps you to keep making the most of it in your dating and relationships.

Why Music Might Increase Your Resilience to Chronic Pain

I’m a musician. Not professionally of course, but it is definitely part of my identity. I began playing the piano at age 5. I took lessons until I graduated from high school. I took practical and theory exams with Conservatory Canada (formerly the Western Board of Music) to the point that I have Grade 8 practical and Grade 4 theory. In junior high and high school I played the alto sax in band and jazz band. In high school I sang in the choir, played they keyboard for one of our vocal jazz groups, sang in another vocal jazz group, and always had a role in the school musicals. To this day, I still play my piano daily and sing along with songs as they come on the radio. I can play about 3 chords on the guitar, and I swear I’m going to take lessons one day! As a mental health professional I have also learned a lot about music and resilience.

Check out this podcast episode with singer-songwriter Sarah Luby who has T1D and UCTD.

Resilience can be defined as the ability to adjust to change or difficulties in life. Resilience utilizes our emotional strengths and our awareness of and ability to use our coping mechanisms to overcome adversity (Merriam-Webster, 2021). Resilience is also key to dealing effectively with chronic illness and chronic pain. Why? Because things are constantly changing and adapting. We have strong emotions and thoughts about our situations and these can often lead to depression and anxiety as well. We need to and want to be able to cope with what is happening. Yet many of us struggle with resilience for several different reasons, from childhood experiences to the pain itself and a lot in between. The good thing is we can learn to develop more resilience.

There is a ton of research on the benefits of music, such as increasing self-awareness, being more socially connected to others, and it helps to regulate mood (Schafer et al, 2013). It also enhances self-regulation, initiative and helps to strengthen relationships with others, not just connect us with them. Resilience skills in general do the same with our self-regulation, awareness, mood, initiative and relationships. There is a lot of overlap, so it makes sense that music would be helpful for this. In terms of how music builds resilience specifically, there is the idea of ‘musicking’ or our musical life in terms of an I-Thou relationship (this is an interesting existential idea that allows us to engage in perspective-taking, which in itself increases resilience as I’ve seen first-hand with my clients). The relationships of sounds, bodies, and psyches as presented in musical compositions/song builds this perspective-taking ability (Malloch & Trevarthen, 2018). Beyond this, musician can communicate musicality in order to enliven both themselves and listeners. (Malloch & Trevarthen, 2018). Therefore, listening to music, not just playing it, can build reslience.

In a clinical setting, music can be used in two different way. Music Therapists use specific music interventions to help individuals with their specific goals, mood regulation, resilience, etc. in an individual or group therapy setting. There is specific training to be able to do this. The other is “music for wellness” which is having musical experiences – listening, playing, etc. – for the purpose of wellbeing and general functioning. As I’m not a music therapist, I encourage my clients to engage in the latter, which is also how I engage with music.

I have since had my actual upright grand piano shipped to me. So much better to play on!

Music for chronic pain has also been studied. For example, in a palliative care setting, music was found to actually decrease chronic pain in patients, which I found super interesting. This really ties into the resiliency. Typically when we are more resilient our pain either actually decreases or just doesn’t bother us as much. Honestly, I’m fine with either scenario. The last few days my knee has been hurting a lot. I’m not sure if it’s related to my UCTD or my hyper-mobile knee joints (my physio thinks they’re related to each other). I do notice that when I play the piano, or even just listen to music while I’m on a walk, my pain is less noticeable. Perhaps because of distraction or perhaps because the music is building my ability to be resilient, not just in those moments but throughout life. Take a listen to this podcast episode with musician and music teacher Melissa, who has multiple chronic illnesses.

Pick a song to listen to, play, or sing along with today and see if that helps you to keep making the most of it!

How Do I Become a Castle with My Boundary Setting?

A lot of people struggle with boundary setting in their relationships. I often see people complain that their family members don’t treat them well, that their spouses don’t, and it seems all the worse for people with chronic illnesses. And actually, that is part of what Gabor Mate says in When the Body Says No. Boundary issues are common within families, and perhaps are part of the “social” part of the biopsychosocial aspect of disease.

Image from: https://positivepsychology.com/great-self-care-setting-healthy-boundaries/

And look, I’ve been there. Though I have good boundaries with my family members, it’s often because I set them. For example, I tend to not talk politics with some of my family because our differences in views were causing me stress (and stress is bad for chronic illness!). I do sometimes still struggle in romantic relationships and friendships. Setting a boundary means being assertive, and sometimes that pisses other people off, especially if they’ve gotten a way with violating that boundary for a long time. As chronic illness warriors we need to get good at setting boundaries as part of our self-care. Here is one way of thinking of boundary setting.

De-stressing does not just mean bubble baths…

Imagine that you are a castle, and the boundary is the personal space that you are placing between yourself and other people. The walls of the castle show that personal space. The moat lets other people know how close they can get to you, and in this case it can change size depending on the person and/or situation. The draw bridge itself is what allows people to get in, and keeps people out. This draw bridge helps us to feel secure. The castle guards are the actual skills we have to protect our boundaries. They can also help us when someone crosses our boundaries. And it’s important to remember that boundaries can be verbal, physical, emotional or spiritual.

This is the image my practicum site gave clients when we gave psychoeducation on boundary setting.

So how do we exactly do this? Well, short answer is to say no, resolve conflicts, follow our values, be assertive, and express our needs. But that is easier said than done. Saying no and being assertive both require practice, and if we’re nice (which most of us with chronic illness apparently are), it’s super difficult to do these two things. If you have a therapist, then that might be where you practice these skills. Otherwise, it’s easiest to start with boundaries that aren’t going to upset the other party as much. The other pieces of this: resolving conflicts, following our values and expressing our needs can be handled with some self-exploration, by answering the following questions for ourselves:

• Who are the most important people in my life?
• Who is there for me when I’m struggling?
• What are these above relationships like for me?
• What are the positive things I get from this other person?
• What are the negative things this other person says or does? And how does that affect me?
• What do I want to get? And what am I willing to give?
• What have I tried already in regards to boundary setting and how has this worked for me?

Once we’ve done this, we have three options:

• Leave or end the relationship.
• Stay and live by our values: change what we can (remembering that we can’t change other people’s behaviour) and make some room for things that we may not like (that aren’t in dire need to change)
• Stay and give up acting effectively – which is all to common an occurrence

How I look when I set some boundaries…

The more you practice setting boundaries, the easier it will be. It will also start to reduce your stress, which means you may start to see an improvement in your symptoms (be it physical or mental health), and are more likely to improve your well-being. Let’s keep making the most of it everyone!

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Setting Boundaries

Boundaries are super important for all of us. With work, relationships, even ourselves. While boundaries are important for everyone’s mental health, I think that for Chronic Illness Warriors, the key is to be able to set boundaries that still allow you to ask for help when needed. I would say that I am pretty good at setting boundaries, but that was definitely a skill that I developed over time. I was reminded of boundary setting as I was preparing for group counselling that I’m co-facilitating as part of my practicum. So I’ll admit I’m borrowing some of this information from Marsha Linehan’s Dialectical Behaviour Therapy (DBT). The group has a few pscychoeducation components as well as counselling, including mindfulness (you know that’s my favourite), emotional regulation, distress tolerance, and interpersonal relationships. Though I’m not a “DBT-er” (I’m clearly happy to be co-facilitating the group though and learning all of this) I think that many bits of information from DBT and this course have great applications for many of us! (For those of you wondering I am drawn to existential therapy as well as Acceptance and Commitment Therapy).

My best llama impression.

Okay, so why should we set boundaries? Boundaries allow us and others to know what we are okay with and what we are not. For example, some people are huggers while others don’t like to touch (granted Covid, so many of us are in the non-hugging category right now). The person who doesn’t like to be touch needs to tell the other person (politely, if possible) that they are not okay with that. The tough part with boundaries is that if they are crossed, it can be awkward or feel rude to point that out. However, your mental health is important and if you’re really not okay with something it’s good to be vocal about it. Another example is a work one. Is it okay for your work to contact you when you’re not there? I was in a position about 6 years ago where I told my work it was totally okay for them to contact me when I wasn’t there. About two years ago (same company, different store) I told them I wasn’t okay with it. I set the boundaries and stuck with them based on the level of stress I was able to handle at the time.

Costa Rican jungle.

When it comes to chronic illness, setting boundaries can revolve around many different areas, but I’ve found two are the most important: others, and ourselves. With others, you can decide how much or how little information those in your lives get about your illness/health, mental health, etc. I totally believe in sharing but everyone has different comfort levels with sharing, and I totally respect that, as I expect others to respect mine. Boundaries can also include what other people get to help you with. I loosened my boundaries after my hip surgery because I acknowledged I needed more help. Now granted I found myself feeling more grumpy at the time, but it wasn’t because I changed my boundaries, it was because I couldn’t as much myself! And that ties into our boundaries with ourselves. What are we okay doing? Saying? When we push our boundaries are we doing it to help ourselves or because we “think we should”? Sometimes it’s okay to push personal boundaries. With phobias for example, it’s possible to get over them by stepping out of your comfort zone and confronting the feared animal/situation/whatever it is (best to do it with a professional but I’ve known people to do this on their own). Getting over a phobia can be helpful for overall mental health. Saying yes to a night out with friends when you’re not feeling up to it is an instance of crossing your personal boundaries when it is not okay.

Castle in Ghent, Belgium.

I’ve been sharing example from a “personal bill of rights” (Linehan, 2015) throughout and if you’re struggling with boundaries, I would say create your own (or use which ones of these resonate with you). Even stick it somewhere that you’ll see it often. Remember, that boundaries while important should be flexible because they lead to healthier relationships (including the one with yourself). I would love to see what you come up with so feel free to share on Instagram and tag me (@janeversuspain)!

Have a great week and keep making the most of it!

From Virtual Dating to Real Dating? Pandemics, Reopening, and Chronic Illness

As we move into reopening phases in many places, some of us might be looking to take all of our virtual experiences and start going back to the “old ways.” Whether that be just seeing our friends in person (crazy thought after so many months, I know!) or going on actual dates, the thought that we don’t have to solely rely on online contact is amazing. Yet, for those of us with chronic illness, slow and steady might be the best course of action.

I miss getting coffees liket

I’m not saying you can’t or shouldn’t start doing “real life” things again. I have started to see some friends in person, and I’ve been back to work where I deal with the public consistently (some lady refused to sanitize her hands but then proceeded to put on a face mask which made me laugh at the lack of logic but okay). What I am more cautious about is heading on dates. For one, assuming any date goes well, there is potential for kissing at the very least (if not more) and exchanging saliva with a stranger when there is still a pandemic going on is probably not the best idea. As cases do become lower and lower that may change, but for now I’d still rather play it safe than risk getting an illness that could be made worse by my underlying illness.

Me at work… keeping others safe from me, and hoping they’ll keep me safe from them.

There is also the strong possibility of a second wave to come yet. If we look back historically to the flu of 1918, the second wave was much worse than the first. And though, yes this is a coronavirus, not a flu, a second wave could be terrible. While I am happy to be a risk taker in many areas of my life (adventure travel, moving provinces or countries at the drop of a hat, changing careers, starting blogs and podcasts, etc) I am not one to compromise my health more than it already is. Does that mean I won’t go on any dates until we have a vaccine? Unlikely, but it does mean I’ll be a little more selective of who I date (as if I’m not selective already lol) and how quickly things move.

Remember when we could share drinks with our friends without a worry?!

What are my other chronic illness warriors thinking about dating right now? Leave a comment, I’d love to hear from you.