Tag: disability

How can relationships successfully deal with the issue of grudging consent?

Jess MahlerLeave a comment

Note: This is based on an answer I wrote on Quora a number of years ago. The original question was from a monogamous person grudgingly agreeing to a polyamorous relationship, but my response resonated with people in a variety of circumstances. It was one of my popular Quora answers, as well as one of the most personally meaningful.

I’m going to take a stab at this. On the one hand, I agree with many folks who say that grudging consent is not consent. On the other hand, I am in a relationship where resentment and grudgingly dealing with shit is a regular part of our day. Not because of polyamory but because of disability. So I have a slightly different perspective on relationships that include resentment and grudging going-along-with than most people.

So, some background. My partner was not disabled when we entered a relationship together. They were working, had some ongoing health problems. While we had the normal ups and downs, we did okay.

They became disabled over a year, gradually getting worse, then suddenly getting worse, getting better for a little while then getting worse again. We’ve worked hard to keep our relationship going, but it’s been a struggle. I can’t leave them alone with the baby, which means I NEVER go anywhere without the baby. Half the time they can’t wash their own hair, so I need to wash their hair for them. And there are only so many times a day you can be asked to interrupt what you are doing to get someone else a drink before it starts to grate on you.

We’ve been together for about 7 years now. Their health has varied a great deal over that period: including one hospitalization, numerous ER trips, and brief periods when they’ve been able to put their cane away, watch the kid while I worked a night job, or help with the housework.

I love them, I am happy to be in a relationship with them, and I resent the hell out of their disability and the demands it makes of me every fucking day.

Obviously, every relationship is different. As I always say: take what is useful, ignore what is not.

Every day you choose. This is the most important thing of all relationships—every day you choose to be in that relationship. You didn’t say “yes” once, and that was the end of it. Every day you either choose “I’m in this relationship and I’m going to make it work,” or you choose “I can’t/won’t/don’t want to make this work anymore.” Sometimes you need to say “I’m in this relationship, but I need to take care of myself today, so I’m going to step back and will get back in the harness of making this relationship work tomorrow.” That’s okay. But every day you choose. If everyone involved in a relationship says every day, “I’m going to make this relationship work,” the relationship can last through just about anything.

If the relationship stops being healthy for you, it’s time to choose to stop making it work. Don’t force a relationship to work at the expense of your own health and well-being.

Focus on the good things. Living with and taking care of a disabled partner is its own kind of hell. Especially when you don’t have a diagnosis and have no idea if your partner is suffering from a chronic condition or if they are dying and you don’t even know it. You can’t think about it too much, or you will drive yourself crazy. Similarly, a mono partner in mono/poly can’t focus on dates and fears that their poly partner will “find someone better” or other negatives of mono/poly. Focus on the good in your relationship. (Etc for other kinds of relationships.)
(They make me laugh. No one ever made me laugh like this before. They understand me, my depression, my anxiety, my PTSD, and they accept all of it. And they try. Always, they try to do better and be better. Some days, I’m afraid they’ll break themself trying but better, so much better, that they try than that they give up.)

Find ways to adapt. How does disability (poly) change your relationship? How can you change your routines and expectations to work with, rather than against, those changes?

Trust. I need to trust that my partner is doing everything he can. That when they tell me they can’t get to the kitchen to get themself a glass of water, they really are in that much pain. That when they say they can’t wash their hair, they really can’t reach their arms over their head. A mono partner needs to trust that when their poly partner says, “I love you and I won’t leave you,” they mean it. That a poly partner who says “Having sex with someone else doesn’t change how I feel about you,” is telling the truth. The mono partner may not understand how their poly partner can feel this way, but they need to trust that it is true. (Etc for other kinds of relationships.)

I never consented to life with disability. I live with my partner’s disability grudgingly, resentfully, and sometimes painfully. But I love my partner, we are good together, and to be with them I put up with their disability. We talk about it. I cry on their shoulder about how I resent it and how much it demands of me, and they don’t blame me or get defensive because they understand. Sometimes they cry on my shoulder about how they hate hurting me, how they feel like I should leave them and be with someone better because I deserve more. And I hold them and tell them I love them, and being with them is worth all this and more.

I can’t tell you how to turn grudging consent into acceptance. I’m still trying to find the trick to that myself. But I hope this helps.

Just remember, every day you choose. And if there is often something to be celebrated in choosing to continue a difficult relationship, there is no shame in deciding that you can’t anymore. We can only give so much without harming ourselves, after all.

Personal update: I wrote this answer over 8 years ago, and a lot has happened since then. I mentioned in this answer that we didn’t have a diagnosis and so didn’t know if my partner was dealing with a chronic condition or something life-threatening. It turned out to be a whole constellation of different problems: some chronic, some treatable. One of the treatable ones was life-threatening, but since it was treatable, that’s not a concern anymore (thank god!) They are still disabled, and so am I now, but we are still choosing each other every day.

Four Ways to Get an Emergency Medicine Stash

Jess MahlerLeave a comment

Back in the early days of COVID, ‘experts’ advised everyone to have two weeks of everything on hand — including medicine. That’s… a bit difficult to do with prescription meds. Many folks were frustrated with the advice and how useless it was to them.

I’m a small-scale prepper who has been working on getting a month’s worth of medicine on hand for a couple years now. The so-called experts were unreasonable to expect people to get two weeks of prescription meds right away. But with time, it is possible — and a good idea. So I decided to help folks out and wrote a quick thread on ways to get the recommended two weeks of medicine.

I decided it was time to turn that thread into something a little more accessible. So here you go. (This info is specific to the US, but some of it will be helpful to folks elsewhere.)

If you want to be able to have extra meds on hand for emergencies, here are some tips:

1. If you have a good doctor, talk to them.

A doctor can up your dosage for a couple months so you can ‘try’ the higher dose, then ‘decide it doesn’t work’. You squirrel away the extra from the higher dosage.

Your doctor can also call in refills early.

How well this works will depend on your insurance and pharmacy, but if your doctor calls in refills 5 days before they run out ‘to be sure you’re covered’ and you can get them right away, that’s five extra days of medicine you can save.

2. Do you have as-needed medication?

Those are the easiest to save. Every time you don’t need it, take it out of the bottle and put it with your emergency supplies.

3. Most of us aren’t good at taking our medication every day.

Some of us miss often, some only once a month or so. But it happens.

Get one of those weekly or monthly medicine things, or make one yourself.

At the end of the week/month, every dose that you forgot to take goes into emergency supplies.

4. Call your insurance.

Yeah, I’m serious. Many insurers have a policy that they will authorize an extra refill once every year to account for lost, stolen, etc. shit. This is also supposed to cover in case of a natural disaster — you can call and say, ‘My house got flooded, and I lost all my medicine!’ and they’ll get a refill authorized early.

So use that policy, call them, and ask if you can get your refills early. (This includes at least some controlled substances bc we were able to get Lozepam refilled this way once.) Our insurance doesn’t ask why; they check which medicines we want and remind us that we won’t be allowed to request extra refills for 365 days. Others may have different policies.
If you can get the extra refill, the medicines from your prior refill can go into emergency supplies.

Okay, that’s what I’ve got.

But there may be other things you can do.

If you can, talk with your doctor, pharmacist, or caseworker. Tell them you need help getting the recommended emergency supplies; they may have more ideas.
You probably won’t be able to get a supply of ALL your medicines, at least not quickly. But you can get started and get some of them.

The real pain is if your medicine schedule is still in flux. Don’t know how often I’ve finally gotten a month’s worth of one medicine, and then the dosage got changed or it got dropped.

But it can be done.

Good luck! And a final important tip from @gendertreyf@masto.jews.international :

Once you have an emergency supply of medications make sure you use them before they expire. I like to use the old bottle and put the new bottle into the emergency stash every month. That way the meds never get old.