Has Your Health Isolated You From The World?

[april abbott]

I recently posted about doing so much better this past year, and I know that I shouldn't complain to you guys considering this fact, but I have been in such a rut this week. I worked my butt off for 3 years(fighting illness unbeknownst to my fellow classmates) and now that I have graduated with honors, become licensed and registered for my profession, and excelled academically in all areas of school, I am sitting at home without a job and without any friends.

Have any of you felt like this illness has taken your whole life away? Don't get me wrong, I am grateful to feel better physically, but dysautonomia took away my entire life while I was in my 20's. I got sick when I was 20, and here I am, 30 years old, and I am feeling isolated and lonely. Because I was on bedrest, sick and weakened by an unknown health problem, I lost track with the few people I was close to. No one had time for a young woman that didn't have the strength or energy to go on huge shopping trips, out for long lunches, or walk for hours on end on vacations. I was the party pooper. Even my own sis would get frustrated and tell me "you never want to do anything." Ummmmm....I felt like I was going to die, and before diagnosis I thought I might.

I have very little family outside of my husband and daughter. My Dad and my husband's grandmother live here, but that is it. I have no one my age to talk to, hang out with, or confide in.

My only girlfriend I had while growing up here has pretty much shortened our relationship to a monthly phone call or an occasional message on myspace.

I can't find a job! No one here is hiring, especially new graduates. Dental hygiene is a fast paced, money making business, and I have only had 2 interviews since graduation in May, and both offices seemed to question my clinical skills just because I am new to the field. Hello?! Everyone is new at some point; surely all these other hygienists were at one time newly entering the field.

I have searched and searched and no one is hiring, yet most of the girls I graduated with already have jobs. Many of them are working because they left the state for better working conditions, pay, and benefits, and several girls I know were hired because they had connections. Must be nice to be sitting at home and get a call from a friend of a friend with a job offer you didn't even ask for. In this day and age it doesn't matter how smart you are, how hard you work, or how dependable you are, it is all who you know. I graduated with a cum 3.895 GPA, scored in the top 18% on my national board examination, and passed my state licensing exam without a problem.

So here I sit at home, no job, no friends, no much needed income, and we're financially broke, my car is a junker that probably won't last 3 more months. But I can't afford a new one without a job. If my car breaks down, then I can't even get a job, so I am stuck b/w a rock and a hard place.

Worst of all, I don't have anyone to talk to about all of this. No one to shop with, go to lunch with, etc. All the girls I went to school with were nice to me, but most were considerably younger than me and they tended to pair off in little social groups. The girls I had most in common with live too far away to have any relationship at all.

Sorry to rant, everyone, but I am just so frustrated right now. I want my life back! Does anyone else feel this way or am I just being an idiot?

[potsgirl]

April,

I think that there are tons of us out here that feel the same way or have felt the same way in the past. I could've written a very similar email, especially the first 6 months after I knew I was ill and that I finally had to leave my coveted job. I went back to school to get my master's, worked some great anthropological/archaeological jobs, got my dream job in Tucson, and 9 months later had to quit. You have to let yourself go through a grieving process for the life you once had, and when that's over, start looking at how to make your new life the best one possible. Hopefully, you'll recover fully one day. But if not, or while you're waiting, you have to use other channels to get what you need.

The Forum has been terrific for me in reaching out to others and making friends. True, they're not usually near enough to meet for coffee, but I've developed some great friends via this Forum who I email and speak with...we support each other every day. I'm in a situation like yours, where my day-to-day functioning is up in the air, and often I can not get out to meet my old friends for coffee or go to a movie. I'm in bed by 7-8 at night! I have my boyfriend, who is very supportive, but it's not like having girlfriends...I try to walk most days of the week, but most of the time I'm home, on the computer, reading books (thank God for books!) or watching shows I've recorded. I know it's frustrating, but on the bright side, it sounds like you can work - which means that once you find a job, and you WILL - that you'll have outside contact and the ability to make friends again.

Please feel free to get support/friends from Dinet, and I hope you're feeling better soon.

Hugs,

Jana

[april abbott]

Thanks. I hate to whine, but sometimes we all need to vent.

[Rene S.]

Hi April,

I so can relate to what you are going through and my heart goes out to you. I'm a lot older than you, but still it's so tough being stuck in the house or just going out for drs visits. This is should be a happy time for you and I'm sorry it's not. My girls are grown and have left and so has my husband. All of my so called friends have decided that there's nothing physically wrong with me, that it's all in my head. Sure. I choose to be this way.

I had my own business and if you told me 9 months ago this is how I would be, I would have laughed. It's not funny now.

I hope you have support from your husband, I know it's not the same as having a girlfriend come by for coffee or going out to lunch. How I long for those days.

I wish you well and I'm so sorry that you are in the throws of this awful illness. I hope you do eventually find the job that you worked so hard to get to.

Most days for me are spent doing research on the net, trying to take a 5 min walk maybe twice a day - pathetic I know and filling my time with reading and reminiscing.

Take care and know that we are all here for you.

Rene

[maggie]

April,

I'm so thankful that there is a safe place for you to share you longings for health, job, and most of all friends. All of us here on this site have lost so much of our lives, we can all relate to your sorrow over what you have lost. As we reflect on our lives and dreams about what could have been or what could come in our future we must leave room to grieve the loses we have incurred. Hopefully we can go through this process and come out on the other side and begin to treasure whatever memories we have from yesterdays, treasure the moment we have now, and then have hope for our future. I know many of us here will keep you in our thoughts and prayers that life will be better for you in the days to come and for all of us here on this site.

May blessings come to you and your family,

Maggie

[erikainorlando]

Wow~~~!!!

I am so impressed!! You graduated and with this horrible illness!! I know it is not probably an answer but I ahvce to say...just bask in the fact that you did this!! Do you know how amazing that it? You will find a job...just congradulate yourself. Try to take it easy...you have accomplished a great deal.

Also, most of my friends don't understand and honestly my best friends these days are my kids and my boyfriend. The rest of the world really doesn't get it....i only have energy for people who "get it"....

Pat yourself on the back....you have done something amazing!

Erika

[Stace915]

I think we all feel that way sometimes. You really should be so proud of yourself for making through school and graduating, I didn't get sick until a few years after I graduated college and if I had gotten sick earlier there is no way I could have completed school. You will find a job, unfortunately it may take a while because of the economy. I am 28 and have been sick for a little over 4 years and I have lost my share of friends because people didn't understand that I really was sick, or just how severe it was and once I was no longer able to go out to bars or hang out and do "normal" things a lot of them had no use for me. It sounds like you have a wonderful husband and a child who are there for you and you have all your fellow "potsy"'s, maybe you could make plans with some of the women from school that live further away that even once a month they can come visit and just come over to your house and hang out for a few hours, have a cup of coffee, talk, watch a movie... or whatever. I have a friend that still invites me out with her and her husband all the time and the majority of the time I am not feeling up to doing whatever it is but she will stop by every once in a while, even if I feel like **** and lay in bed and she hangs out with me and watches tv. Adult companionship besides our significant others is helpful once in a while to keep us sane!

Keep your head up and try to enjoy your weekend, I will keep my fingers crossed that a great job comes your way soon.

[ramakentesh]

I know what you mean I think - due to fatigue and those kinds of things at times I cant really keep up with friends and socialising in busy environments is always pretty uncomfortable. I volume load when I need to feel ok in a social situation. Most of my friends are drinkers so they dont realise Im out of it half the time

[Guest tearose]

Take the good times and squeeze all you can out of them. I deeply understand and send you comforting hope.

I use to be very outgoing and active. I have had to learn how to meditate and live in silent al~one~ness. Try to find blessings in the challenges. This will help sustain you.

I have a 4.0 undergraduate average, went on to get my Masters Degreee...all before POTS, and now am unable to work and use these skills and gifts as I had wanted. I try to do my ADL's and if possible, volunteer a little, but most people have no clue as to what we loose with this disabling, unpredictable syndrome.

Please gather your strength and when you are able , try to find some activity that won't relapse you but will make you feel worthwhile.

warm regards,

tearose

[rymac]

The title of this post got my attention. The answer is yes. I have been dealing with symptoms of dysautonomia since my teens. I didn't get diagnosed until a few years ago. At least my family can stop thinking I'm a hypochondriac. I know I was starting to think I was! LOL I've lived alone for many years and have a hard time keeping contact with friends. Life hasn't been great and it feels like it just gradually gets worse. I try to believe things will get better someday and I won't be alone forever. I'm closing in on 40 and starting to have doubts. I found this forum last year and it has helped me find people who understand what we are dealing with.

Hang in there April. I hope you find a job or it finds you.

[Stace915]

Its me again, April what state do you live in? Maybe someone on here lives close to you and you could meet and hang out? I was also thinking about your post last night, and realized that in my brain fog yesterday I might not have made much sense lol. I know I mentioned something about finding a friend who is willing to come hang out even when you are stuck in bed, but it sounds like now that you are feeling good (knock on wood), you are really just looking for another adult that you can go out and do things with and I know how much it can suck when you feel like you have nobody (although it sounds like your hubby is wonderful, sometimes you need a change of scenery), what about some of your daughters friends Mothers... are you friendly with any of them or could you see yourself becoming friendly with them? If there is anyone you could see become a friend that she hangs out with their kids maybe next time you see her (or could call her) and just say hey, I am starting to feel pretty good lately and I was wondering if you would maybe like to go out and get a cup of coffee or see a movie. Let her know that you are still not up to running a marathon or a day of shopping but that it would just be great to have some adult company for a few hours even if its just to b.s. and talk about the kids.

OK...now I am rambling...time to try to dry my hair (my first attempt failed and left me laying on the floor!)

[gertie]

I can relate to what you're saying. I am so proud of you for getting your education under stressful circumstances. Things usually get better when you're least expecting it. I used to know everyone in my town, did volunteer work after my regular job, involved in church etc. After 25 years of dysautonomia I don't think I have a true friend left. When it got where I couldn't do things for other people or go to church things quickly changed to a lonely life. You're young & have a whole lifetime ahead of you to make new friends. Maybe you could find a part time job until something in your profession comes open or even volunteer for a few hours if you feel like it. Best of luck.

[persephone]

Has my health isolated me from the world? Oh yes, for years. But that doesn't mean I have to BE isolated from the world. If people dson't know about my condition, it's my job to educate them. It doesn't always work- but when it does, it's an amazing feeling.

April I know how you feel- you can only see sorrow, and unfairness, and feel sad about the life you feel you could be living.

But the first step towards feeling better, and more energised- because you are putting a lot of energy into anger right now- is to look for the positive. No matter how small- it's tough. Sometimes I am *so* pissed off with everyone and everything around me.

But if I challenge those negative thoughts/observations, then things get brighter.

Do you have evidence that those girls got their jobs through connections? I have worked in a similar environment where people get jobs through who they know. I feel pity for them- I would rather get a job through WHAT I know. That would prove to me that unlike people who rely on old school ties and similar networks, I could get a job because I'm good enough.

It's hard to have an invisible illness, but rest assured, if your friends ARE real friends, they won't be mad because you can't go to lunch for hours, or walk for miles. They just won't fully understand why you can't do those things.

Why don't you give your friend a call- the one you don't see too often- and invite her over? Or perhaps you could meet her somewhere nearby. If it all gets too much, you can say, "I don't feel too hot- I need to get home, I hope you understand?"

I know how trying it is to be in that situation. But look upon this as an opportunity to sift through fairweather friends and fnd real ones. I had to do that- and it was painful. I look at the friends I had before my illness, and do you know, some of them stopped talking to me altogether because I got so ill they didn't knw what to say/they thought I might not make it. Charming! But you know, I'd rather find out the truth about people sooner rather than later. What point is there in wasting energy on people who are insincere? Yes, I miss the life I had before POTS.

But by working hard at steadily finding the positives, the life I've got now is special and precious too. Different doesn't have to mean inferior. It just means new, not the same. Be open to change- be open to people, and open to seeing the positives.

Sending you big hugs.

[persephone]

I forgot to say- I also have a similar background to you, being a graduate who undertook study when sick. Be very proud of your achievement. It is worsth so much more than for those who tok their health for granted. You are special.

[MomtoGiuliana]

Congratulations on completing your degree. I think I remember you from a few years ago and you were house-bound? Your health must have improved and that is excellent!

This is a very tough economy right now. It's scary for a lot of people. We had 12 layoffs at my place of work last month. I'm trying to help one young woman, very capable, who was laid off to find new work and it's very difficult. I hope you find something soon, but it may take awhile through absolutely no fault of your own.

I still remember how isolated I felt during the year I was too sick to work. It felt like friends just melted away. A friend who will stick with you through a long illness or other challenge is a rare and special person. It's not that they don't care, it's that their lives continue as normal and you can't fit into that/they can't relate/your illness is scary or disturbing to them.

I like persephone's idea of reaching out to an old friend. I hope you try that.

Let us know how you are doing.

[rymac]

April, hope you are doing OK.

I was thinking about the subject of isolation as it applies to those of us with this illness.

I'm sure most of us have made our homes as comfortable as possible. Where we have access to everything we need deal with our symptoms. It was a holiday weekend and I had the chance to travel a little and go visit some family. Part of me always wants to just stay home and not experience any more pain than I have to but being alone all the time stinks too.

I decided to go visit. The 2 hours driving there and back left me a wiped out (I know I should feel lucky I can still drive), I got a sinus infection and had a really bad headache that night at the hotel. I'm glad I went but sometimes it just doesn't seam worth it. I'm guessing most of you can relate to this.