Navigating Intimacy: The Hidden Challenges of Sex in Chronic Illness

In a loving, happy and long-term relationship, sex should always have that exciting and often mysterious feeling. However, there’s no doubt that as life begins to, well, life us even more, with the stresses and pressures of our modern worlds, sex can and often takes a more nuanced seat in the relationship.

The days of lying in bed naked together, chilling, watching tv and having round after round of exciting lustful sex - ah the good old days! The days when everything was new and exciting, the days when lust ruled and, ultimately, the days before we had our amazing children. 

It is important to say that, for my wife and me, sex hasn’t gone away or stopped. Yes, sometimes we can go several weeks without, but it is still a part of our relationship. 

I realise now, though, that sex in an almost 20-year relationship will never feel like it once did, but not necessarily negatively. Sex today is way more meaningful, our connection much deeper, and the quality is usually better. 

Impact of Chronic Illness on Intimacy

That was, until the elephant in the room—and no, I don’t mean me — showed up in the bedroom, too. 

Yep, you guessed it, my conditions have affected our sex life. 

Now, I don’t write posts like these for the graphic details, nor will this post be that, but I will talk candidly about my experiences with sex. If this is likely to make you feel awkward, then here would be a great place to move on to another article of mine. You can see all my other posts here. 

I guess, being completely honest on the subject and which I admit I haven’t always been with either my wife or my medical teams, it started a few years back. 

It began with subtle changes in how intimacy felt, especially intercourse. It still felt good, just not amazing, like it once did. The sensitivity is there; it just didn’t feel the same. 

I could still gain and maintain erections and finish the job - see, trying not to be too graphic! 

But again, as more time passed, I noticed more frequent occasions when maintaining an erection seemed almost impossible and we’d have to stop, take a break, try again later or abandon the mission altogether. 

Performance Anxiety

Now I know well that this is likely a combination of my disease process and progression on top of a psychological one, commonly experienced by many men, performance anxiety. 

For everyone out there that has never experienced this - you lucky buggers - it’s crap. Basically, you spend the whole time, from beginning to end, worrying about every aspect of your sexual performance. Will I be able to get an erection? Will it be hard enough? Will I maintain it throughout? Will I satisfy my wife and be able to get her to her climax before me? 

The whole thing sucks! 

The irony is that by having these thoughts, you ultimately make these things more difficult, anyway. If you are worrying about not being able to get hard, then the chance is you won’t. 

Becoming aroused has never been an issue for me - I’ve always stood to attention when required - but I will admit that my libido has definitely decreased. Having historically been the one in our relationship with the high sex drive. 

I know I am getting older and could probably do with some blood-work to check on my testosterone levels and perhaps get on some TRT or Testosterone Replacement Therapy but that’s for another day. 

Back to the bedroom - sorry that felt smutty! 

For me, unfortunately, it is likely more than low testosterone and psychology, but more nerve issues causing intermittent issues with ED. 

Navigating ED and Communication

And here’s the kicker. Which I feel terrible about and don’t really know why I let it happen, but my wife doesn’t know. She obviously knows there have been occasional problems because there is no hiding that, but she doesn’t know that I have been taking a generic form of Viagra called Sildenafil for a couple of years now. 

The other problem with this is that it now feels like a giant lie, which I know will upset my wife, but it never started out as a lie. It was a male pride issue mixed in with a dose of “my illness must be progressing” and a futile attempt to shield my wife from this depressing fact. 

It has also meant that I could not be honest with my healthcare team because my wife is always present with me at my appointments. I know the time has come to discuss this with my wife, as it is important that both she and my medical team know what’s going on, otherwise neither of them can help and support me. 

ED isn’t an issue every time and I know this because taking Sildenafil requires planning and when the other person doesn’t know you take it can make this an arduous task. 

I have spent the last few years reading the room, my wife’s behaviour and the subtle signs that always seem to exist. It's in those moments I have to decide if this is likely to proceed, and if so, take a tablet hoping things don’t happen before it has time to kick in, which is usually about 30 minutes for me. 

There have been a few occasions where I have obviously miscalculated things, taking Sildenafil and let’s just say, launch was delayed, postponed or never going to actually happen. 

Luckily, unlike the misconceptions around these medications, these drugs don’t just give you an erection. You require sexual arousal and stimulation - so you don’t end up aimlessly walking around the house with a rock on tucked into your waist band for hours hoping it would piss off. 

So far I’ve talked about getting to the act, which until now seemed to be my biggest problem, but like all my other symptoms, things like changing or get worse. Sex is no different. 

Uncomfortable Realities of Sex

So I take Sildenafil, I would say 60% of the time, this helps to eliminate the intermittent engine malfunction I occasionally experience - see, I’m still trying to keep it, not weird! 

What I am now finding is that pain, cramps and spasms are causing more and more issues during the act than they ever have before. 

My muscles, for instance, in my arms, struggle with weight bearing, which obviously makes things difficult when trying to support myself, thus stopping me from falling on and crushing my poor wife to death. 

When I stress my muscles, they tremor, spasm, and do other horrible and painful things. 

This takes performance anxiety to another level because now, you don’t just worry about the functional stuff, as discussed above, you worry about what you must look like to your wife. 

I must look like some flabby, aged seal, trembling and panting away while looking like I may fall and belly flop her at any moment. 

In all honesty, that image alone is enough to put anyone off having sex, ever again. 

That’s the graphics of getting started and the other parts out of the way. Now the end and the after! 

Coming to the End

I always finish. I have read about many with similar conditions that can’t, so at least that is something to be grateful for. Climax through intercourse has changed a lot over the last few years. It used to feel euphoric and something I couldn’t get enough of - like a drug; I guess. 

Nowadays, it doesn’t feel this way and as I type this; I realise yet again that I haven’t spoken to my wife about this either. To a degree, I think much of this is down to me ignoring it, pretending it’s all well and getting on with it. My wife and I have a brilliant marriage, so I can’t think of any other reasons for not having spoken to her about these issues. 

There are still other forms of pleasure that feel good and without going into too much detail, because I don’t want this to be too graphic and weird people out, remember? 

Oral. I said it and it didn’t feel smutty. 

Perhaps it’s because there are still areas that felt something when touched, which aren’t stimulated during intercourse. Perhaps it's a combination of things, one being a lack of expectation for myself to perform. Maybe it’s because I lay there and don't feel like that big flabby aged seal. Who knows! 

No matter the method, the ending is always the same. It finishes, and that is where more problems occur for me. 

Dealing with the After Effects

Yes, tremors, twitches and jerks during sex are frustrating to say the least, but afterwards they become something else. I can barely walk. My body trembles, shakes and twitches. The fatigue goes through the roof. My arms and hands tremor and my balance is worse than normal and that’s saying something. I walk, well, more of a stumble, like a drunk in town on a Friday night, just without the pleasure of having touched so much as a sip of alcohol. 

This can play out for hours or, sometimes, the rest of the day. 

It makes what was, is and has been a massively important part of a solid, loving relationship, such a difficult thing to fulfil. Each time, it makes me question how much longer I can physically and mentally keep putting myself through this. At what point do you say enough is enough? Game over! 

If it wasn’t for the fact I am married to a person who also has sexual needs and desires and whom I would do absolutely anything for, I would probably be at that place now. 

If I became single tomorrow, I would probably aim to remain so for the rest of my life and commit to celibacy, thus protecting myself and any other poor soul from having to go through this again. 

My Closing Reflections

My disease has taken so much from me. My ability to hold down paid employment and provide financially for my family. It has taken much of my physical strength, given me a drooping posture and unstable mobility, affected my memory and cognition and reminds me it’s still there with painful spasms and cramps. 

How is one meant to accept that at 37, it is slowly taking away my ability to engage with my wife sexually? I know there are other forms of intimacy, but sex and a human need for sexual gratification don’t just disappear. That’s for both of us. I guess we continue to move forward, adapt where we can, and ensure we continue to fulfil each of our needs in all the ways we can. 

I hope you have found this article helpful? I am well aware of the taboo around talking about sex, especially in physical disease and disability, which is why I felt the need to write this post. 

I also hope it can work towards removing the stigma around sex and begin those conversations. I know for me, writing this article highlighted I hadn’t been open and honest with my wife, likely through stubborn male pride and the denial of worsening symptoms. Now I realise it. I will address it and tell my wife just how much I have been struggling. I know she’ll feel hurt that I didn’t tell her sooner, but ultimately I know it’ll also bring us closer together. 

If you have stories or experiences to add or share, please do so in the comments/discussion area below. Remember, I tried to keep my article clean, not to graphic or smutty, so I and my other readers would appreciate it if you could to. I will have to remove or edit those that go too far. So please be mindful.