Miss Understood: Help Wanted

Miss Understood: Help Wanted

I’ve been on disability for approximately 8 months now, and I now consider myself a housewife and full time mom. However, executing my duties has been anything but easy and I find myself needing the help of others more than usual. With constant flares and one to two doctor appointments a week, I often ask for help on a regular basis.

Arlene Grau

Arlene Grau

But there are people who assume that since I’m now a stay at home wife and mom, I should be able to get everything done on my own. So when I ask for any kind of assistance, they are reluctant to extend a helping hand.

The common misconception is that I have so much time on my hands and I’m no longer “working” — so my life is a lot easier now.

Caring for two young children, along with keeping up a home, is a job in itself. I’m a mother, nurse, maid, cook, tutor, and so much more. Along with that, I’m dealing with constant pain and suffer from joint stiffness every single day. I currently see my doctor every week due to the severity of my conditions and I’ve been suffering from bad pain days more frequently.

Sometimes all I want to do is sleep. My oldest daughter is in school but I still have a 3-year old at home and she requires constant supervision. On bad days I wish I could take my medication and sleep it off so I’ll feel better once it’s time to pick my daughter up from school, but finding someone who understands that is hard to come by.

It’s not that I don’t want to take on my responsibilities, but I’m on disability for a reason and sometimes people tend to forget that. They offer to help in any way, but when the time comes they’re too busy. Or in many cases, I’m too embarrassed to ask for help for fear of what people may think because I’m constantly asking the same group of individuals.

Most people work and have their own lives, so being bothered by my requests for assistance is the last thing they want. But I’ve offered to help others even though I don’t feel 100 percent, so why can’t someone who has their health do the same for me? It isn’t as though I ask the same person every time or that I ask them to do everything for me. Sometimes it’s something as simple as watching my daughter so I can go to my doctors appointment.

But sadly, some of the people I do trust with my kids won’t even be honest about their refusal to help. They make up excuses or lies instead being upfront about it. I’m an adult and I don’t expect people to want to help me all the time, but lying to get out of it isn’t necessary.

I guess what I can’t wrap my head around is why some people claim they want to help in any way possible, when they have no intention of keeping that promise.

Stress and depression play a big role in my health, and it’s impossible for me to be stress free when I’m constantly looking for help because I can’t count on anyone. Then depression sets in because I realize my circle of friends is getting smaller and smaller every year because of my health.

If I had the money, I would hire someone to help me full time. But I’m not receiving anything from social security because my claim was denied and I’m currently appealing, so my husband is the sole bread winner.

So if you’re a friend or family member to someone who is ill and suffers from chronic pain, realize that they require a lot of help. Don’t offer to help if you don’t really mean it.

Put yourself in their shoes. One day you may get sick or reach an age when you may not be able to do things for yourself. If you want a good group of people willing to help out, then make sure you were among the helpful.

Arlene and girlscropped1Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Jessica Pohlman

Wow….I completely understand. I have a 14 year old son and 3 yr old daughter ( I haven’t worked since 2009 due to pregnancy and chronic pain). I currently am suffering from rheumatoid arthritis (which is not responding to treatment and has become more aggressive), fibromyalgia, lumbar disc disease, sjogrens, and major fatigue. I’ve been denied disability because I have my 3 year old daughter most of the time (on a one income household we can only afford to put her in daycare 2, 1/2 days a week). They figured since I take care of my daughter I can work. I really hate to admit this, but my daughter would get better care being at daycare all day. I feel like such a failure in so many ways and being denied disability at the hearing level was a kick in the teeth since my attorney swore I’d get approved (have great medical evidence that my conditions are severe). Even the judge found that my conditions are severe…..so I feel like I’m being punished for I don’t know what because not only do I have chronic pain and fatigue but get denied disability because I’m a full time parent. Someone please help me understand…..I just can’t win.

Granny Ralls

WoW! No words to express how much I need to read all of yours! I’ve been saying my folks, kids and friends are all in denial! Its validating just to read others know what I mean. Single mom of 4, tough as nails, and here I sit decimated by this d***ned pain? Yet, I wish they’d get their heads on straight because nowadays, their denial can be freedom and otherwise threatening! Its hard enough to lose yourself but when the ones you love act like their mad at you for it too, it makes you pretty darned depressed! I wish folks could understand that physical pain brings emotional pain, too! Thanks for posting and commenting.

Dennis Kinch

This falls under the heading of “validation”, something we people in pain need badly and never find. I interviewed a lot of people about this subject ( 2 whole chapters in my book) and the very bottom line is this:

People who love you or like you or respect you at all go into their own form of denial. Denial, as we know, is a protection against a traumatic reality. No one around you can handle the thought of you being sick, or weakened in any way. Especially if you always took an important role in their lives like, head of household or “the person who always got things done”.

The more you push the issue, the more you trigger their defenses and they will fight to protect themselves from facing it. There’s only 2 real answers that I can figure; Go to “family therapy” and put the cards on the table under a professional mediation (kids too), or – accept that they love you that much, that you’re scaring the crap out of them. Then find a volunteer group or community group to help out. As the saying goes: ” Forgive them for they know not what they do.” Forgiveness is the long term answer. None of this is easy but it may point you towards the right road, I hope.

I raised my 2 girls as a single parent, worked nights when I could work, even cooked on my knees because I couldn’t stand up, so I know where you’re coming from. But I didn’t want my kids to suffer from my diseases – so I denied their behavior too. I just did what I could , when I could.

I figured one day they may inherit my diseases and this was my chance to show them how it’s done. I made a lot of mistakes and learned a lot and I promise you, they will not have the same rough road that I did. Knowledge is the real key. Someday, like me, you might look back on this and realize you made it through.

Mrs SANDRA L WEIDNER

Unfortunately that is the way people handle what they don’t understand or don’t know what else to say. EX: When my first husband died and left me with two preteens, everyone one especially the male friends of hubby, would tell me to call if I needed help with anything or someone to help with my son. None of them meant it. They just did not know what to say.
Have you tried maybe setting up a play date for the 3 year old ahead of time? Then you can have a day to rest and pamper yourself. I know house work is a chore in itself if you are healthy and pain free. I gave up a long time ago. I do what I can when I can and don’t worry about it. If hubby complains, I tell him nothing wrong with him doing it, that I did it when I was working. Ask your Dr or church if they know of anyplace that offers assistance occasionally for free or very minimal expense. Just some avenues to explore.