Need to rant..unsupportive person pushing me to my breaking point.

[imapumpkin]

Hey everyone, I know it's been a long time since I've posted anything, but now I feel like i need to rant about someone I simply don't have to the tools to deal with. So saddle up, this is going to be a long one.

I have mentioned before on the forum that my longtime boyfriend's mother (hereafter I shall refer to as BFM) has been extremely difficult and less than supportive of me and my relationship with my boyfriend (who I'll refer to as BF) for years. It has caused me a great deal of distress and anguish for a long time, but since BF and I are long-distance, I only have to put up with her face to face one weekend every 8-12 weeks or so. But after last week, I feel like she has really pushed me over my edge. It's been several days and I am still so angry. 

Last weekend was one of our college friends' wedding an hour away from my BF's house, but about 3.5 from mine. So to avoid holiday weekend traffic, my mother wanted to drive me to meet my BF halfway as is our routine (as I am too fatigued to drive over two hours to his house on my own) on Thursday night then head to the hotel for the wedding on Saturday afternoon. This meant more time around BF's mom than I am used to, which is usually only Fri night-Sun afternoon.  When BFM speaks to me, it is not a conversation. It is an interrogation. And her questions may seem harmless to her, they feel very intrusive to me. What meds am I on. What vitamins do I take. Why do I take B12 injections. Which doctors have I seen. Why haven't I seen more, BETTER doctors. Why am I not supposed to eat certain foods. It is as though she thinks I can't converse about anything else under the sun. I don't like to discuss my POTS or my health in this way, particularly with someone when it's not coming from a place of respect or concern. She acts as if I am not a fully-formed adult with thoughts, ideas, opinions, interests, hobbies, hopes, dreams...and since I don't have a job, she assumes all she can talk to me about is my health stuff. I am becoming exhausted just typing about this because it wears on my soul so heavily.

Anyway, the first thing she said to me upon arrival at the house was "Why don't you wear full-leg pressure sleeves?"

Keep in mind it was 90 degrees, ten o'clock at night, I'd just been traveling over two hours and I was huffing and puffing to bring in what light luggage I could carry. I explained that I don't need full legs because I only need the BP support in my lower extremities because that's where the blood pooling is.

"Why."

"Because blood only pools at my ankles."

"Why."

I admit at this point I just couldn't coherently respond. Next was a battle of where I was to sleep. I am always relegated to the guest room downstairs next to the kitchen, but I am always disturbed from sleep very early in the morning because it's right where everyone is getting up and getting ready. Instead of letting me stay in his sister's vacant room (she no longer lives at home) my BF suggested I take his bed and he would take the guest room. He had to run it by his mom first, who tried to convince me that downstairs was cooler for ten minutes, then closed with "But it doesn't matter to me, do what you gotta do." Then the power went out, so there were no fans, no light, and we weren't allowed to flush the toilets because they have well water. That's when everything when pear-shaped. I tried to sleep, but it was too hot, and BF's mattress was very hard and was hurting my hips (I have been having pain around my SI joints for months; still not sure why). on top of that, each time I tried to drift off to sleep, I would experience a massive jerk in my muscles. I went downstairs and switched beds with BF because the guest bed is less firm, but the jerking continued. Around 5 AM i started to feel nauseous and by 7 AM i was having to use the bathroom every half hour. At 10:30 AM BF's mom asked why I was up so much and I said i thought I had a stomach bug.  She asked me why I was making myself a hydration drink, and i told her because I needed to replenish the electrolytes I was losing. She told me you're not supposed to drink when you have a stomach bug, that she's "raised five children that way, I was raised that way, and any doctor will tell you that's the truth." In my sick, overheated and sleep-deprived state, I just took my nuun drink and went back to bed. I had already spoken to my PCP's nurse who absolutely agreed I should push fluids. I wasn't able to get any more sleep.

For whatever reason, BF's family didn't feel like installing their AC units, so I spent the rest of the day in a 90 degree house with the windows wide open. When I went to bed Fri night, I figured I would be so tired I'd fall right to sleep. However, the jerks were worse, and I was beginning to get widespread muscle twitches. I spent another sleepless and nauseous night feeling as though I was losing my mind from sleep deprivation and frustration, convincing myself that these twitches were my own anxiety sabotaging myself. I wept, feeling that I could never attend my friend's wedding after two nights without sleep. My body simply couldn't cope even before my POTS diagnosis. However I must have been running on adrenaline, because while I was aching, exhausted, messing up my words when I talked and running on a very short fuse, BF and I actually made it down to the hotel Saturday afternoon after spending all of Saturday morning and most of the day in the 90 degree heat. We met up with my brother and his fiancee who happened to be in the area for dinner, and everything seemed to be alright. I was sure I would be so tired I would fall asleep immediately in the well air-conditioned hotel room in a plush, comfortable king sized bed.

As soon as I tried to start going to sleep I knew I was in trouble. My body was twitching uncontrollably. Although I was exhausted, my legs didn't want to stop moving. I tossed and turned and got up to pee but the twitching turned to tremors and by 3 AM i told BF i needed to see a doctor. We drove to a nearby ER where it turned out I was extremely dehydrated with a significant electrolyte imbalance. To their credit, it was the most wonderful ER experience I've ever had. They gave me two liters of IV fluid and some Valium which helped with the twitching, and by 9 AM we were headed back to the hotel for a quick nap before we had to get up and get ready for the ceremony. I was able to get an hour's sleep thank goodness. I was also able to attended both the ceremony (which was a full Catholic mass complete with please be seated/please rise every 2 minutes) and the reception who knows how but I did it. My body ached, my nerves were overwrought, but somehow by the grace of God we got through it and I mercifully was able to sleep Sunday night. We decided not to mention the ER trip to BFM upon our return to his house the next day.

The first thing BFM said to me when I burst through the door desperate to get to the bathroom after the hour drive (obviously I was trying to remain well hydrated) was "you need to learn to train your bladder" because that's what her daughter's doctor told her to do. I didn't even respond because obviously I'm a different person than her daughter with different medical issues but there's no use telling BFM that. 

She then proceeded to grill me about how I was feeling, the state of my hip pain, why I thought I had hip pain (for the second time that weekend btw) and went on about how she wished I could take something to make my BP higher. I've already told her countless times there's nothing else to try since midodrine gave me a kidney infection and florinef is a no-go. She then asked me, "If you had something that made your BP higher, would you be all better?"

My exhausted and demoralized self could only manage to sigh, "NO."

This is something I have been dealing with for years. While my BF is exceptionally supportive, even he has his limits, and he is unable or unwilling to ask his mother to back. the. heck. off. Days and days later I'm still stewing in my unhappiness over how his mother treats me and I just don't know how to cope with it anymore. This is someone who is likely going to be in my life forever, yet I don't know how to cope with her nonsense after this past weekend. if you google "What not to say to a person with a chronic illness" every list you'll find she has said everything on it to me. I don't know what to do, I'm at my wit's end with this woman. I realize you can't change a person's nature which I supposed is one reason BF doesn't feel like saying something to her will do any good, but how do you get someone with serious boundary issues to back off? It's really affecting my anxiety. Any suggestions would be helpful.

 

[DizzyGirls]

Oh, you poor thing.  I am so sorry you were grilled like that.  People can be so insensitive.  Instead of asking what she could do to make your stay more comfortable, she took the form of a drill sergeant and just assumed you could be doing more.  Like you haven't tried... I counted how many doctors it takes to manage my daughter's care, I think I stopped at 8.  I really don't know how you would deal with someone like that.  Personally, I think I would have to stay in a hotel.  I know you want to be close to your boyfriend, but this lady's intolerable.  It's a shame that a special weekend, a wedding, etc. had to be overshadowed by the boyfriend's mother.  You know, I've found that many people have no clue about medical issues, especially complex ones like all of ours.  It's tough.   Does she ever try to talk about things other than medical?  I'm sure you have other interests beyond that of your health condition.  Our health conditions to take up a good amount of all of our time - most of us probably go to the doctor at least 85-100 times a year.  I know my girls do.  We are trying to trim that down this year, but I would actually like to work in possibly seeing a dentist!  Something normal that gets pushed by the wayside as we try to make room for specialists, MRIs/CTs, etc. 

Hang in there and (I know this is cliche) but try not to let her get under your skin.  She is just uneducated and doesn't understand how all of this works.  Maybe try changing the subject.  I'm sure you've done that, but focus on her, maybe, and then maybe she won't focus on you.  Sounds like a good one for the "Ask Amy" column in our local newspaper!

[dancer65]

Hi

i am sorry you had such an awful weekend. 

Personally I would write to you bfm thanking her for having you to stay and then I would go on to to say you appreciate her concern for your health and thought that as she had so many questions about your condition that this article would help to clarify your illness as when you are not well it is hard for you to explain . I would include a medical article explanating pots and that you have very experienced dr who is supporting your needs. II would find articles and copy and paste to include your symptons and to make it a short read . 

I think letters are a good way to get your point across as you can take your time to construct it so it comes over in the right tone, personally when I feel rough I can't communicate verbally so well! 

I would really try to win her over ( I know it took me a few years to win my mother in law over but now we get along really well ) it will be important to you bf that you get along with his mother , boys are usually very protective of them . mothers are looking out for their sons and it's hard to convince them you are good enough! I would also play on the fact that your bf is supportive and  caring and some how praise her for his upbringing that she must be proud of him etc 

I may just add I am mother of two grown up sons  one with girlfriend the other with wife and baby.  theses realationships can be really difficult sometimes and take up energy that we don't have but i know my husband appreciates the effort I have put into making the relationship between his mother and myself good, she turned out to be a rock when I was really ill so sometimes people can suprised you more than pleasantly! I have one sons girlfriend who is so thoughtful sends flowers rings me to chat etc it makes for a very happy house when we visit each other. 

i wish you luck and hope that others can give suggestions 

[Lily]

It is almost impossible to get other people to change, but you definitely can change your response to their behavior.  I recommend instead figuring out how to not feel so stressed about her and her behavior.  Any time I have felt stressed about something I did not want to happen but happened anyway, I have found that wanting it to be different was more stressful than the thing itself.  Does this make sense?  In other words, maybe it will be less stressful if you can stop wanting BFM to be different and stop being bothered by her behavior.  Like with annoying 2 year olds.

[statesof]

Hey imapumpkin, what I'm hearing from your story is that your bfm is speaking to you in a way that makes you feel at best uncomfortable and at worst defensive about your health, and from what you said it sounds like she feels as though she needs to help you. It sounds like there is a bit of a boundary issues; of your bfm's not understanding that you have everything you need to take care of yourself. Have you told her specifically what is is that you need from her? Which in this case may be, your needing her to understand that you can take care of yourself, or that her current approach, although coming from a supportive place, makes you feel uncomfortable? Just some thoughts. 

[shan1212]

It's hard to know what will work with your BFM, so I guess I would recommend a variety of strategies.

1. Set boundaries and stick to them. When she tries to steer a conversation into uncomfortable territory, simply say, "I can't explain that" or "I won't discuss that." Answer in as few words as possible. "I can't do that?" Why not? "It didn't work." Why not? "It just didn't." Etc.

2. Try giving her the benefit of the doubt. She sees your pain and she feels frustrated that she can't help you. Instead of approaching you with empathy and support, she's manifesting her feelings as frustration directed at you, as though you could just fix your health with some different stockings or BP medication. Realizing that her ultimate goal is for you to be healthy might help you feel a little more compassion towards her. You just need to remember that she's lacking in the self-awareness and compassion to be of any real use to you.

3. Set up emotional walls. I've dealt with a crazy in-law, and I just do a lot of smiling and nodding. A good trick is to turn the conversation back around onto something to do with her so you don't have to talk about yourself. Lower your expectations. She's unlikely to change her ways at this point in her life. I expect nothing from my crazy in-law so when they exceed expectations, I'm pleasantly surprised. 

[imapumpkin]

thank you for the responses.

i've been with my boyfriend for almost seven years, and his mother has been...challenging for all of that time, even before i got sick. she is someone who requires a great deal of energy to be around even in the best of circumstances, but now that i am debilitated by POTS, my ability to handle it has dramatically dropped with time and through interactions with her.  i do not expect her to change, but my kind of central thesis for this rant was that after almost four years of her treating me this way with my illness, i just don't have the wherewithal to handle her nonsense anymore. i don't have then energy. i can't find the spoons. i recognize that ultimately she WOULD like me to get well, but it's troubling since it's not for my own sake; it's so that her son will be with an able-bodied person again, so even when she sounds like she's expressing concern for my well-being, it always comes off as a thinly veiled "why is this whole getting better thing taking you so long and why aren't you doing more to speed up the process."

statesof: yes, i've told her. she doesn't listen. and essentially i've accepted that i can't swim against the tide, but she asks me the same things over and over and over again.

shan: thank you for your boundary suggestions. i feel like i can't get into the medical explanations anymore with her so i think "it just didn't" and "i can't explain that" will be very helpful.

[SarahA33]

Hi, Pumpkin! We missed you!

I was so sorry to read about your struggles with your BFM.  This is such a difficult condition to manage without extended family/friends adding extra stress to our lives. You definitely need support and encouragement when your struggling and feeling so poorly. We're certainly here for you!

Even when we try to focus on other things, our bodies remind us that we're sick. So, I can see how having a person who is so disrespectful and uncompassionate to deal with could take it's toll. I’m just sorry you have to feel attacked and be confronted in such ways, and I’m sure most of us here can empathize with you to some extent. I've had the "but she doesn't look sick" card pulled by family and it's horrible and hurtful. However, there's only so many times you can explain this condition, and at this point it sounds like she is baiting and poking. Whatever is going on here, these are her issues and it's not your fault. I think all the others have made really great suggestions. I feel boundaries could prove useful here, and Lily mentioned something important. We only have control over our behavior, not anyone else's, so we can change how we react to them. 

All my best, Sarah

 

[yogini]

I am so sorry that you have gone through this. It is hard to know why this woman is doing this - maybe she is trying to help?  It sounds like she actually knows a lot about POTS - more than most people in my life do!  But she is totally stepping out of line, especially if you don't have a good relationship with her int he first place.  

Can your BF talk to her and tell her to back off?  He should really be doing this and standing up for you.  The only reason you are dealing with her is because of him.  He could simply say mom, I'm sorry but pumpkin doesn't feel like talking about her health anymore.

If he can't talk to her either, I would just change the subject when she brings up your health.  I wouldn't answer any of her questions, because she will just use the info against you.   You don't owe her any explanations and your health is really private and none of her business.    There are many options - you can say you're already getting the best care, that you are not in the mood to talk about your health, that your health is a private matter. You are the best place to figure out what's appropriate based on your relationship with her. If you stand firm enough times she'll get the hint.

I think writing a letter to this kind of person would be a mistake. She will forever have a piece of paper to quote from and use against you. 

Edited June 6, 2016 by yogini

[imapumpkin]

yogini-

thank you for your words or encouragement. i agree with you. i don't want to give her a letter that she could hold over me. we have never had a great relationship even prior to my POTS onset and she has shown a penchant for saying unkind things about her children's significant others, so I have no expectation that she will get any nicer.  BF has agreed to speak with her before my next visit, and i said i can tell her definitively that beyond asking how i'm feeling, i won't be answering any more health questions myself when i visit next. tbh it is has been a tremendous relief to hear that he is willing to do so.

[yogini]

Great, I am so glad to hear that he is supportive.