posted
I was talking to my Mom today, like I do everyday, but today is a bad day and I'm extremely tired so I didn't have much to say...not much changed from yesterday.
She asked what was wrong and I said I'm just very tired today, just a bad day. She then proceeded to tell me, "Why don't you go to a psychiatrist...." I said why? She said "Well you've been sick all the time, maybe you need to see one, he could help"....
Well, I was fine mind wise, aside from the fact I can't think straight, but now I am depressed...lol My own Mother and Sister don't believe me...great family support! I have my husband and children who are my cheerleaders, so I don't need the others...Thank God I have them!
I was wondering if anyone else has family members who think that you are crazy, a hypochondriac or faking! It's bad enough that for 20 years my husband and I have been searching to find what was wrong with me, being told by doctors nothing is wrong... We finally get a diagnosis, that puts all the sickness together and I am textbook case,I am now searching for a good LLMD to treat appropriately.
I have never acted like I was ill, always put on the fake happy face and trudged along. Now my illness has hit bottom and I can't do even half the things I used to do... I guess I faked it too good, so they don't even believe me...shoulda gone into acting.
I will hang in there and push past this hurdle...but it sucks to not have their support...strangers are kinder to me lately
Hope everyone is doing the best they can and I wish good health to you all...
Posts: 78 | From connecticut | Registered: Mar 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you have any degree of inner or middle ear trouble, you might share this link with them and let it go.
This explains just how much even "just" vestibular symptoms can affect a person.
Note that nearly all these symptoms are ALSO lyme symptoms. For myself, it's hard to know what is from lyme and what from the structural damage I have (which may or may not be from lyme).
Still, for those in my life who just don't want to or can't wrap their head at all around chronic lyme, I just explain that the vestibular condition . . . [I just can't write more but I think you can connect dots.]
posted
I am very lucky to have a very supportive family and friends, and finally now a llmd. However, I do also go to a psychologist - just to talk out frustrations and get advice on how to deal with all of this when I feel lousy.
I'm glad your immediate family is there for you!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
I think the most important thing I've learned from having Lyme is that people you expect would support you won't. The meaness I've experienced from my family has made me cut all contact.
We live on a nice small close knit neighborhood. Everyone knows we have Lyme and they see us struggling to do just basic yard chores. No one has ever offered to cut our grass, take care of our weeds, or shovel our snow.
One neighbor has offered to cut our grass if we pay him $50/week. We have a reallly small lawn.
We have enough toxins in our lives, we don't need it from friends and family too.
But on the bright side, I've experienced such kindness from complete strangers.
Posts: 88 | From NE | Registered: Apr 2012
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I'm sorry you are going through this terrible illness. It's very difficult when we feel that family doesn't understand. Even more so when we feel that they are labeling us.
With all due respect, it sounds as though your mother was wanting to suggest help for you with your depression. I wasn't there to hear her tone of voice, but I certainly can vouch for the fact that as a mother, if I see one of my children struggling and becoming depressed over it, I'm going to suggest therapy/counseling and yes, possibly a psychiatrist to see if maybe something else can be done to help with the emotional symptoms we carry with this disease.
I, myself, made an appointment with a psychiatrist while in treatment. My anxiety level was off the wall, I was paranoid and had all the symptoms others do who are fighting. She was very helpful and was able to put me on a mild antidepressant that totally helped with the anxiety. She may not have understood the complexity of the disease, but she DID understand the symptoms I was having.
In addition, attending weekly group therapy sessions was another life saver. Nobody EVER insinuated that I was 'crazy'. It helped me through the treatment process and they were completely supportive and interested in my recovery.
I just want to remind folks that family members sometimes are in the dark. And because of the effects of this awful sickness, we are constantly put in a place where we feel we must defend ourselves. Please don't forget that counseling and therapy can help those of us who need it most.
angelp, I pray you feel better soon. I know what you are going through. Hang in there and don't give up!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While this is often suggested for many lyme patients by those who think we are not physically ill -- a proper professional may be able to help.
But not just ANY one.
And, only if you already have a LL doctor who is addressing the infection(s) and support methods.
To help with all the neuro-cognitive-emotional parts as we go through lyme treatment . . .
There are some ILADS-educated Lyme Literate therapists, counselor, psychologists and psychiatrists - you just have to find them.
As with other doctors, IMO, it's vital that they be ILADS "educated" and LL.
The best referrals come from LLMDs or LL NDs -- or other lyme patients in the area support groups.
- explores the neurological and toxic ways that lyme and other tick-borne infections can affect emotions.
=================================
To help your family better understand, you might share this -- but keep in mind that not every person with lyme has ALL these symptoms - or all at once: ----------
When To Suspect Lyme Disease - by John D. Bleiweiss, M.D -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Perhaps family members would like to attend a lyme support meeting for a better understand? I'd go first for yourself to get an idea of the composition of the group. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Don't call her for awhile,that will drive (HER) crazy.
Simple Psychology.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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posted
Thanks all for the suggestions and support...
The thing is that I am not depressed....she just doesn't think I'm in pain ....so her quick fix is drugs to cover the pain...i.e..a phsyciatrist...
I have nothing against any therapy at all..but when a family member doesn't believe you are in pain, when you suddenly can't walk and have to crawl upstairs or can't write cause your hands aren't opening...etc.
It's a bit of a bummer, when the one person I figured would understand, doesn't. Its not like I just got sick...it's been 20 years of searching. I'm used to feeling ill...
I also understand being a mother, as I am one. My son is 26 and was bit at 4 years old and has neurological issues and joint pain cause of not being treated correctly at 4. I never have told him I didn't think he was sick.
I guess it's how she is and it is a bit of ignorance and no knowledge. I have tried to teach her about it..maybe over time she will understand...as for my sister, I gave up on her a long time ago...she thinks its for attention..haha a great way to get attention.....
Thanks again to all... May good health and better days be on the way
Angelp
Posts: 78 | From connecticut | Registered: Mar 2012
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posted
Ugh...I'm sorry to say my family treats me the same way. So, I feel for you. My sister, the know it all nurse told me "You need a check up from the neck up" several times. It seems that unless I get a diagnosis like Lupus or Cancer...ya know...real illnesses with real names. She has also made comments like, "Well you seem to have a low pain tolerance". I really felt like hitting her hard when she said that.
At that moment I knew I was alone...on my own with this. My mother, knowing how sick I've been for 6 years said, "Maybe you need medication for depression...Oh and you need to dye your roots". LOLOL....I laughed the whole way home and for days after about how she just doesn't get it.
I have however been seeing a therapist since this started 6 years ago. I had to talk to someone..I knew something was "Physically Wrong" with me from the beginning. I'm lucky to have found a good one, she is very supportive, understanding and has been one of the ones who said it sounds like Lyme. If you don't have anyone who can listen and be supportive maybe consider seeing one if possible.
Posts: 3 | From Maryland | Registered: Apr 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
This is such an alienating disease. You have my sympathy. My family thinks I'm lyme obsessed. I just tell them that I'm lyme literate and they're not, so of course they think that.
I also remind them that if this were a disease that the mainstream medical community actually believed existed, then they would understand why all of us are forced to seek help, advice and information, much less explain or comment on how we feel.
As hard as I've tried to open my friends and family's eyes about this disease, some of them (not all) just don't want to admit or hear it. I can see lyme in some of them, but I'm not getting through to them.
I guess they would rather believe I'm obsessed than even fathom they could easily get it or even might have it too. I think some of them may think I'm miserable and want some company. Not. I just think lyme is everywhere and truly hope to open their eyes so they don't get it too.
Hang in there, Angelp.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Thanks Catgirl....I agree that if it was MS, like I was diagnosed 15 years ago with, they were upset and wanted to know more...but 6 months ago, finding it was wrong diagnosis all along, they just said "Oh its only Lyme...thats good".
I have always said if they could just live in my shoes, they would understand...just one day, for I would never wish this disease on even my worst enemy.
I will be seeing a new doctor, as mine doesn't do IV and they think it will be need for the brain barrier. I bet when I have to do IV, it will be taken more seriously..lol..its sad that I have to be showing something to be believed...
Posts: 78 | From connecticut | Registered: Mar 2012
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posted
From my experience with my daughter, a psychiatrist has been a crucial member of her Lyme 'medical management team.'
1. Going to a psychiatrist does not mean being diagnosed as a hypochondriac or a faker; it should be about a patient presenting symptoms to a specialist who can offer experienced professional help. He should be able to address your real issues irrespective of whether you have Lyme & he/she only knows the IDSA version of the 'truth'.
2. Psychiatrists can offer so much to a Lyme sufferer whose sleep, chronic & acute pain, depression, etc. issues are complicated, severely affect daily life, and require greater expertise to manage them than generalists can provide. Their expertise in pharmacology especially, allows them to prescribe medication more 'thoughtfully' than a generalist could, and find meds that fit with an individual's unique biochemical makeup. And if a medication isn't working, he/she has the depth of knowledge to look at the whole picture & make adjustments that a regular doctor probably could not.
3. We've actually found that our psychiatrist has been one of the most important members of our daughter's medical management 'team,' which includes her PCP, LLMD, Asian Medicine Doctor, nutritionist, and her psychiatrist. He has been one of the most supportive of all our doctors for my daughter. In fact, he willingly agreed to order tests at Igenex which finally gave us a true diagnosis of Lyme in 2005 rather than Chronic Fatigue Syndrome. I definitely think we have educated him about the true Lyme story along the way.
4. A key point here, too, for finding an appropriate psychiatrist is that ours was referred to us by her trusted counselor - not just a random psychiatrist.
Sorry if this was too long-winded, but I did want to let people know this is a viable avenue of help.
Posts: 2 | From Arizona | Registered: Nov 2006
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posted
I was completely surprised by my older daughter's experience, who was LIVING here with us for several years, as my husband & I cared for my younger daughter with Lyme, sometimes around the clock!
We assumed my older daughter realized how sick her little sis was; she'd been sick since 2001!
Then last year we sent my younger daughter to visit her big sister & brother-in-law for a MONTH -- we put her on a plane with her extra suitcase of pills, supplements, creams, heating pads, instructions, schedules,etc..
After about 2 weeks being the primary caregiver for her little sister, my older daughter called me in tears, saying she'd had NO IDEA how sick her sister really had been & was now, & how much it must have taken for us to care for her sister all these years! She was overwhelmed by it all!
She said she was so sorry for being so blind & insensitive, & that she just couldn't even have imagined this & how much suffering her sister has endured. She would do whatever she could from now on to help us.
I was just floored by this -- and it made me realize that if my older daughter didn't see how truly sick my younger daughter had been when she LIVED with us, how could anyone else, like a cousin or mother be expected to even imagine a tiny degree of her situation if not intimately involved in the caregiving?
Anghelp, I don't think your mother really grasps what you have to live with -- I think we've wrongly assumed that our loved ones just automatically 'get it,' based on what we've told them, because they love us and should just believe us.
But my experience now is that this is simply beyond the scope of imagination even by our loved ones.
This is especially true if the person with Lyme musters up enough energy to last through a family gathering, which so many like my daughter try to do.
But often that's all anyone sees of them and people assume they are doing OK.
I don't know if relating our story to you helps in any way, but I hope it does.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
My mother-in-law called me "lazy ass" when she thought I couldn't hear her recently. She is so toxic that I try to stay away from her as much as possible. She has seen how this disease affects me yet she still has the nerve to say vile things about me. I have bigger fish to fry than her opinion of me. I just "let her go".
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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