Help me help this lady with Ankylosing spondylitis

It was a nice Wednesday afternoon. Saw this young lady with Ankylosing Spondylitis.

Reminded me of the typical Indian #rheum story.

She had been having symptoms since last 5 years. She had consulted an orthopedic surgeon for the same. She was diagnosed to have Ankylosing Spondylitis & was started on Sulphasalazine. She was 27 years old & the parents were eager to get her married. They found a groom in her hometown (Uttar Pradesh). It was a typical Indian village.

The parents did not reveal anything about the illness, medicines to the groom. The lady had a tough time after marriage. She had to manage household work with all the pain; more so since she was in a rural Indian setup where the newlywed is supposed to take care of all the work. Taking medicines daily was a big problem as the illness was never declared.

There was another major problem for her. The marriage plan was never discussed with any Doctor & they had never consulted a Rheumatologist. She was not even sure whether Sulphasalazine was safe in pregnancy. Contraception is never in the hands of rural women in India & she was no exception.

As days passed, the pain started becoming unbearable for her & started showing up in day-to-day life. The in laws & the husband soon realised that something was amiss. Due to the workload & stress, she was soon on the bed. The in laws felt cheated & sent her back to her parents.

And that is how they reached me, with anxiety & stress clearly showing in their face. This was some 3 months back. She saw me again this week. Ankylosing Spondylitis was now controlled, backache significantly reduced.

The next was the big question- what to do next? Should she go back to her in laws? If yes, what are they to be told…This caught me unprepared. Apart from the medical management, they also wanted me to help them reach a decision. ‘You must be seeing so many patients with such a problem- you help us take a decision’ they quipped.
Ankylosing Spondylitis being a chronic ailment, this decision is a tricky one.
• She is prone to have ups & downs, down the line. Would her family accept the future pain/ regular medicines?
• One thought was to call her husband/ in laws & counsel them about the disease. However, I was wondering whether they would really come all the way to discuss about her ailment.
• The other thought was to ask her to carry on with her life, concentrate on her health for the time being rather than the stress of going back to the in-laws, working hard in a hostile environment.
• At her in-laws’, she would be under pressure with regards to pregnancy & may find it tough to manage it with Ankylosing Spondylitis presently.
This patient has really caught me unprepared on the decision front. I thought I should be asking the #rheum community to help me out reach a solution for her & guide her.
• What is the best possible solution for her right now?
• What should the parents do prior to marriage as in this case.
Please post your opinion & help me help this lady!

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44 Responses to Help me help this lady with Ankylosing spondylitis

  1. Heather says:

    I’m currently of the opinion that she should carry on with her life. In the last 3 months she has began the healing process, this could be disrupted by being returned to an environment of stress. While counseling the in-laws may be helpful, it may not solve the woman’s desire to be a good wife and put stress on herself to keep up with the expectations. She may stress herself right back to your office….

    • Thanks Heather for the help.

      As you said, we cannot forget about the lady’s stress & well being while devising a solution. Her take on the issue & the decision would be the most important.

      I’ll keep you updated about the happenings on the blog.

  2. Melissa says:

    Wow, that’s quite a situation to be in. I’m not even sure what to say. I am in Canada and the culture is a bit different and I am very (VERY) fortunate that my husband is fantastic and helps me out when I need it and is really understanding if I’m unable to do something.

    Personally, unless the in-laws can understand her condition and work with her, I don’t think going back is a good idea.

    • Thanks Melissa for your help.

      You are lucky to have an understanding hubby. It is one of the biggest asset if one has a chronic ailment.

      I’ll keep you updated about this lady on the blog.

  3. Purba says:

    Hello doctor,

    I have discussed this with my family and here’s our solutions to this issue:

    We think it is important that you explain the severity of this ailment to her husband and parents-in-law in a face to face meeting. It is important that they first understand what the situation is and then can take their decision on the same.

    The girls parents-in-law and husband need to understand the level of severity of this disease and they should be very well aware of the implications it will bring in their day-to-day life. The girl will need a supportive and healthy environment to live first and then flourish further. And all this is not possible without 100% support from her husband and parents-in-law.

    Since the girl’s parents made a blunder by hiding such a critical disease to her groom and parents-in-law, they have no choice but to accept what girls parents-in-law and husband decide. If their decision is negative, the girls parents should not force them to take their daughter with them as it would be a suicidal decision.

    A disease is not a thing to be ashamed of. Just because this girl has this ailment, it does not mean she should be treated without dignity. At the end, it should be decision of the girl how she wants to live her life ahead – being ashamed of her illness and thus living a submissive and undignified life or accept the reality and be proud of the fact that she can take care of this challenge and live a healthy and happy life.

  4. Keith says:

    I think she has to forget about what anyone else is feeling or thinking, wether that’s her own parents or her in-laws & focus all of her energy on treating & coping with her Ankylosing Spondylitis. It’s easy from the outside to suggest this but I know personally it took me years to understand that I have to worry about myself & my Ankylosing Spondylitis rather than what people are thinking or feeling around me. It sounds selfish but I wish I had done this years ago because it drastically helps to deal with our disease at times.

    • Thanks Keith.

      Your point is well taken. The lady’s welfare should be the final aim. I’ll speak personally to her & discuss your suggestion.

      I’m sure this would help.

      Thanks for this insight. Probably, something that I would have never figured out from the other side of the table.

  5. Sue says:

    As often with arranged marriages in India there is no mention of ‘love’. If the couple have feelings for each other this must be a ‘bonus’ & it would be ‘easier’ for them all to work together.I agree the decision should rest with the girl concerned but she’s probably confused & worried.
    A loving partner & family are essential to be able to understand & care.
    What a position for you to be in Doctor! But they obviously value your expertise & opinion.

    I wish all involved Good Luck.

  6. vikash tripathi says:

    Respected Sir,
    I can understand the situation as I belong to UP and having similar kind of problem but not AS. In case you remember.
    In my opinion she should bring her husband to consult you and if the man has good understanding he’ll understand her pain. In this way at least things will be clear. such
    things should not hide between hus n wife.
    If husband supports his wife then they can continue the medication nd she can come to
    Visit u time to time.
    If he does not understand her sorrow then its better for her to continue her new life by her own.
    Its a case where children suffer theif complete life bcz of their parents but it happens and have happened in ghis case. so we can not change that.
    I hope this will be useful.
    Regards
    visit you time to time. but if he can not share her sorrow then it’s better to leave such person and carry on

  7. moira says:

    not sure my daughter has it in her hips so it doesnt matter what pills she takes they just dont work keeping fit seems to be what her dr says in your story above she and this just my opinion she shouldnt go back to all that stress and hard work i see my young daughter going though it she is in sure pain makes me so wish it hadnt bypassed me as its in the genes what ever she does i wish her well

  8. brenda says:

    What does the young WOMAN want? It’s her body and life. It’s such a shame that most of the story deals with keeping everyone else happy and disregarding what will help her condition. I realize the culture is different than in USA but I still think she’s the one who must deal with the pain and emotions before worrying about anyone else.

    • Thanks Brenda.

      I totally that the lady’s welfare is at the centre & she has to decide. However she is terribly confused with what life has offered & needs assistance to take a decision.

  9. fridawrites says:

    My heart breaks for her.

    It’s difficult to say without knowing more about her family dynamics. Is it possible she would be subject to abuse from her in-laws? Or her husband? Is he more understanding than they?

    Does she feel safer with her family or would she prefer to return to her husband? Ideally, he would go with her and you could help to educate him and provide support.

    Is there a way for some of us in the US could be correspondence partners/pen pals for women in India and elsewhere with AS or other rheumatologic illness? And/or could there be support groups for patients there?

    I think you may be very key in helping her family/in-laws realize that this is not her fault, and it is treatable. But also that her condition could flare/worsen again, especially if she is under stress. She can still be a very loving wife and mother but will need a lot of kindness and help. I don’t know if that will help mitigate their emotions about not being told.

    In the U.S., many of us are very lucky to have husbands and other family members/friends who help with the domestic chores.

  10. fridawrites says:

    Like Purba, I worry about violence against her if she returns. You could have a better sense of the dynamic if you are able to meet with them.

  11. this is a very tricky thing , We just don’t pay by physical suffering but also similar mental agony stays with us and that too forever while going through this disease .. my sympathies with her ..

    I think first of all the lady has to had a clear vision whether she thinks her in laws will accept her open heartedly or she will be better off being alone at present . If she wants to return its her parents who should meet and disclose and apologise with her in laws as they had not disclosed .. Also what about her further treatment if she returns and also the most important thing pregnancy .. all should be made clear and discussed ..
    yes and her parents should not force her to go there and be ready to accept her ..

    • Thanks Deepen!

      As you said, the lady has to think about all the option & be clear as to what she wants to do. She has seen it, has faced it & should take a decision.

      At the same time she should have the assurance that they will help with her decision, even if it means staying back with them.

  12. Oh I can truly understand her condition being a woman who was diagnosed / got the condition after a year of marriage. Being a newly wed does put you in lot of stress to take up the smallest and biggest of household tasks regardless of whether you ‘have’ to do it or you genuinely ‘want’ to do it to show that you are such a wonderful addition to the family.
    The fact that they did not disclose her condition to the in-laws was very very wrong. I know someone of marriageable age who is super talented and successful and does get proposals. But the moment she discloses the condition, they are gone! I told her and still maintain this – please tell the prospective bridegroom and family about the condition. Fine you might not get the ideal partner for a long long time, but if and when you get one, your life will be sorted.
    Now this is what I presume might happen if they think of sending her back to the husband based on which I came up with the advice that follows:

    Whether or not she rejoins the sasural, they will always feel cheated and this will always reflect on their attitude towards her. The fact that they sent her back as if she were damaged goods makes it clear that they really are not the kind ones. This would make her really depressed in the long run and we know how it will worsen her condition as well.

    If she rejoins and they do accept her with whatever apprehension, she will herself do or they will ensure that she does all the tasks expected from a daughter-in-law of a rural Indian household. Having fibromyalgia myself, I know there will be lot of moments every day when she will not be able to do the smallest of tasks. But she will and then her condition will only worsen. What if she is ‘sent back’ again? Will she able to bear the trauma? No! And then she would wonder if she made a wrong decision to return. She will regret it. She will be very depressed.

    Also, if you are convinced to speak to her in-laws without their initiative to have a conversation with the doctor, there is one thing you might want to consider. The in-laws will feel insulted in any case as if someone complained about them. It’s the way how you want to go camping and your parents disagree. After that you ask your friends to speak to them, they will never like it. And hence you will never do it! Same theory applies here.

    Things can change only if her husband truly loves her and goes out of his way to help her out and support and stand for her. But knowing that she was sent back clearly shows that he has no intention to help her. However, if she is comfortable with it, she might want to speak to him in person.

    Based on the above this is my advice:
    There is no need to counsel her in-laws unless they themselves want to meet the doctor which I seriously doubt.
    Her parents definitely need to be counseled. Why do they want to send her back? If the reason is that if she stays will them what will the world say, they are more at fault. If the ones who gave her birth do not stand for her and support her, how can they expect the in-laws to do so?
    Secondly, they are asking you to make a decision for 2 reasons. Firstly and understandably, they are confused. Their first big decision for her was wrong and they don’t want to take a chance now. Secondly, they don’t want the responsibility and want to shift the blame, which might happen later, to the doctor. If you advice them to send her back, and it doesn’t work out, they will always say, “Arre we wouldn’t have sent her, but the doctor said she would be fine!”

    So please talk to her parents and see if they can support her. Explain them the possibilities and consequences on her health and emotions. But don’t let them shift the responsibility and blame on you. It has to be her decision in fact, not her parents’. Ask her in private if she would feel comfortable staying with the in-laws and husband again. If she had to make a decision without the fear of what her family or world would say, what would be it? That probably might be the right solution.

    About the in-laws and husband, well of course they were cheated. And it is difficult for them to an extent. See it was not a love marriage too. So they will always say that the parents of the girl lied. And she might have to hear taunts all her life. Also, they will always tell others that she is too sick to take care of the household and they have to manage everything on their own even as they are getting old. Trust me, she would not want to live with that guilt all her life. I have closely witnessed in many cases what happens when the daughter/bahu is made to adjust hoping that eventually everything will be fine. I don’t think everything becoming better happens most of the time. Mostly, the girl starts to compromise and live like that. And that’s not how she should. Plus she has to take care of her health. I can’t even imagine what all, she might have to bear if she is unwillingly sent to them and later she has a child. Will they take care of her during pregnancy and later?

    Is the girl educated? Can she do something to support herself financially?

    • Thanks Anuradha!

      You have presented an almost ‘all inclusive’ perspective.
      I’m speechless!

      I’ll always remember your point – ‘ If she had to make a decision without the fear of what her family or world would say, what would be it? That probably might be the right solution’

    • साधक says:

      Gave better thought Anuradha, but practically it’s insane to have hope from anyone and asking anyone for help.
      Its better to carry on our life on our own, without bothering about anything else.
      Let the treasure go, it’s not yours.
      Let the people go, they are not yours.

      The decision that I would take in such condition:
      1. Firstly will stay with parents until I am financially independent(doesn’t matter If I am educated or not) and manage to find a room on rent.
      2. Then I would stay away from my parents and in-laws leaving everything on God.

      Better! no?

  13. There was a couple, recently married, discovered that wife had AS. The wife’s family has not told the groom’s family about AS at the fixing of the marriage – a very common practice in India to hide weaknesses of each other.

    ‘Now it has happened, we need to find out solution.’ said the husband, though he cried a little.

    ‘See I think we have cheated you. This AS problem will be with me for life. I don’t want to take away any happiness that a fully-fit wife could give you. You’re young, handsome, you can get a good lady to marry. I am really sorry of what I have done, and desperately want to fix it.’ The wife replied.

    They both were a mature, and sensible person. They kept the emotions aside to reach a practical solution.

    ‘If I get cancer tomorrow, will you leave me? Forget about this, If I marry another lady – fully-fit – but later she suffers from some mental disorders, then what will I do? Look for another girl. No one knows future. I have decided I would be with you, only thing I need that you take care of your health honestly from now.’

    Later, husband and wife faced many problems, including health. They stood by each other, they still do. They are happily leading their life, together.

  14. Alpesh says:

    Sir, its really very critical condition for the lady. My native place is UP i know well about what their in laws may be thinking about the lady, they must be planning to avoid her & also may thinking for divorce. According to me the lady should pay attention to her health first nothing is important then this. I m also an AS pateint as u know sir i asked you last time about some remedy. AS in my case is so acute as i thinking to stop it, its growing in more speed. I m so afraid about this what should i do i dont know, even after everyone looks after cares for me i m not healing what will happen to the lady if she will return to the same stressful enviorment. My wishes are always thier for the lady god bless her. N ofcourse hats off to you sir u r a very nice dr. i have ever seen in my life.

  15. Aalap Parekh says:

    Hello Sir,
    You must be aware of my case.
    This is similar kind of situation what I Faced ,But In my case I was diagnosed with Lupus after 3 months of my marriage (It happen in 2008 till then I did not know and working fine ). and after knowing that she left and we got divorced immediately ..!!
    I was totally shocked .

    But here case is slightly different ,I don’t wanna discourage this girl but here girl is at fault as she hide her problem.Now whats the path forward.??

    As you might be well aware of my case. Its very difficult to convince my self for Re- marry with pain or betrayal of previous marriage.I started thinking for Re-marrying in 2010, after discussing in detail with you .

    Now come to the main point what is the solution for her?

    I will tell what I have done in my case.

    I met her through matrimonial website and on the very first day I told her about my Lupus issue and put my all medical reports(starts from very first report..!!) and medicine prescription in front of her. She had taken opinion of other doctors and felt its not serious kind of illness if manged well.Now we married for one year. I am managing my lupus very well with your help.

    In nutshell
    1) She should tell her problem upfront to her husband/In laws
    2) Consultation with you surely help him to change his mind set in true sense.

    Its very tricky situation . We can not say about guy if girl is similar kind of fatigue in future!!

    Lets wish best for this girl…!!

    • Thanks Alap!

      I know what you have gone through & sincerely appreciate your honesty & the will to win.

      I’ve learnt something important from your experience. This need not be the end of the road for the lady. Her well being rather than ‘making this marriage work’. I am sure God would give her a second chance & probably that would be much better if she is honest.

  16. Hello Sir,

    She is in the middle of deep and flowing river. We are on the bank of river trying to guide her as how to swim to cross the river.

    Problem with us that we are trying to find solution for her problem from our point of view.

    But what about the patient herself ?

    Does she know that she will have to cope up with the disease life long , with continued medication ?

    What does she think about her future ?

    What are her plans for her future life ?

    Unless we get the her perspective from her point of view , how are we able to guide and help her..

  17. Dear Sir, i think whatever had gone had gone, the parents should tell the truth about the ailment to the in laws and they can tell more that they also didn’t know more about the disease.

  18. PRASHANT says:

    Sir, i feel there are two separate issues to deal with.

    Firstly… Family issues.
    Secondly …Health issues

    In my view, both needs to be resolved.

    Resolving family issues will also be important as, out here in India marriage is not just between husband and wife, its an institution. if it ends specially in such cases, Other lives also get impacted… (specially unmarried girls from there close relatives and family) concealing with both the families should help, (but no more lies. just facts and honesty)

    But what ever said and done, Her health and proper treatment in stress free environment is priority whatever it takes….its her life and she deserves to be fit and

    i hope she gets full and proper support from her husband atleast!

    • Thanks Prashant!

      As you pointed out, her health & welfare would be the priority. Let us see what the lady’s decision is regarding the marriage.

      I’m sure she would also be worried about the collateral damage the decision can cause.

  19. Irwin Lim says:

    Hi Shashank,

    Such a difficult situation, and mainly due to the cultural & societal issues around arranged marriages.

    I see quite a few patients from India in my Sydney clinic & thankfully this particular situation has not presented.

    No great help from this fellow rheumatologist is possible but your previous commentors obviously understand this situation and have hopefully helped you in making your decisions.

    Good luck!

  20. Iris Carden says:

    Wow, Doc, I didn’t realise you had to be a marriage counsellor as well.

    I know there’s extra issues with the whole arranged marriage thing – but my marriage wasn’t arranged, and one of the reasons it fell apart was that my ex-husband decided I was just lazy. He was constantly angry at me for wanting him to help me around the house. (I was working full-time as well, and was always exhausted and in pain – but my lupus wasn’t actually diagnosed at the time.)

    The marriage can only work if everyone involved knows what’s going on and understands what that means in real life, and is willing to accept it. If that’s not agreed up-front, there’s always going to be some resentment, and no amount of effort on the girl’s part will make it work. (But too much effort on her part could make her very sick.)

    Unless she has some real desire to go back, surely she’s best to deal with her health condition, get back to as good a health as she can. Then she can be free to find a new path in life that will be more fulfilling and less harmful to her health.

    Whatever you recommend, please make sure it’s what’s best for her, and something she wants, not what best suits the parents who got her into this mess. Living with a painful chronic illness takes away so much, it’s important to be able to exercise some choice when it’s possible.

  21. It was really painful to understand the lady’s situation and what she must be going through. I am finally writing the same what I felt immediately after reading everything including most of the comments-
    Since the wellbeing and fate of the lady will be majorly depend on the husband and his take on the situation (ofcourse if she goes back). understanding that persons views and judging him becomes important to take the decision and I also sense the parents would not be the right ones to take the same.
    I trust you are the best judge in that terms and even if not complete decision can be taken by you but your input matters a lot. so, please meet the fellow and make him aware of the fact and you should charge the parents to do all this (On a lighter note)
    I really wish she goes back and situation some how gets managed, since this is a typical rural indian scenario. The mental trauma will be more if she stays back at the parents place.

  22. Thanks for sharing this precious information. I like your concern in the post which is very useful for me.
    I like your information which is very useful for me. Thanks.

  23. Thank you everyone for the opinion & the help. 500+ views, 36 useful comments & a healthy discussion on twitter in a weeks time is the help that I’ve got from all of you.
    Here is the discussion as it unfolded on twitter..
    Your suggestions have helped me reach a basic plan for action. In fact, it has given a different insight altogether.

    1) I’m going to keep the lady’s perspective & her welfare as the primary aim. Prior to this blog, I was probably driven into ‘saving the marriage’ as the primary aim by the parents. I owe this to all of you.

    2) I’ll be speaking to the parents separately & explain to them the chronic nature, the possible ups & downs in the future & the type of support she will require to do well. I would explain to them that they should respect the daughter’s decision & support her even if she wants to stay back with them.

    3) I’ll speak to the lady in the absence of her parents. As Anuradha said, I would ask her ‘ If she had to make a decision without the fear of what her family or world would say, what would be it?

    4) Whether to speak to her husband before taking a final decision would be left to her. I would not speak to the in laws unless the husband takes the initiative & wants me to do so.

    5) The final decision would be left to the girl & her parents. I can only be a guide.

    6) If she wants to stay with her parents, I would strongly urge her to
    become financially independent. She is educated & this should not be a problem.

    Please help me with any further suggestions…

    • Alpesh says:

      Nothing more is required. All your 6 points are ready to heal the lady n also to change her life very positively.

  24. Sue says:

    So pleased you have all decided upon a plan of action.
    Good luck to this lady & everyone involved in helping her. She’s very lucky to have met such a caring doctor as yourself. Best wishes

  25. brenda says:

    I agree with Sue. You are a very caring doctor & I hope many others follow your lead.

  26. Dear Dr,
    The action plan outlined is definitely a right plan. Next action plan to rehabilitate her can only emerge after her parent’s views and final decision she takes.

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